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Little Stories in Little Places

February 9, 2017

I’ve been feeling confused. Perhaps you can help me with my confusion?

The 7 Days of Action campaign is being wound up, to be relaunched as something with a different tone and, hopefully, a wider reach. The original campaign had become too associated with me and the original seven families and unintentionally was in danger of becoming too self feeding and keeping others out. I’ve spent a lot of time lately looking at what worked and what didn’t work. The feedback I’ve received suggests that in attempting to present very human stories about peoples’ lives in ATUs became the campaign’s greatest strength but it’s greatest weakness at the same time. The same thing that engaged many, also turned off many. One of my disappointments was that we didn’t engage enough people within the professional front line of the social care system. I’m not talking about the academics, the writers or the researchers who all had a strong presence. I’m thinking about the social workers, the best interest assessors, the people who make the decisions and the people who work in the Units. Some got involved big time but the number of retweets, for example, from those groups was very small.

This blog is coming up for its fifth birthday. I had two reasons for starting it back in 2012. Firstly, I like writing and I realised that by being named in our court case, a space had been created to indulge my love for writing. Completely selfish motive. But secondly, the one thing I’ve never been able to reconcile about Steven’s unlawful detention (and I’ve had enough therapy in the past six years to try and get a handle on it) is the way Hillingdon turned Steven into a non human. At best, they made him an object. At worst, they made him an animal. As that is the person I love with all my heart, I’ve never got over the sadness and injustice of that. So my second motive was to redress the balance and relentlessly tell the normal, everyday stories of our lives.

I guess I approached the 7 Days of Action stories in the same way. I wanted the humaness of the seven dudes to come alive in a way that would prevent the reader from “othering” them. I didn’t want the dudes to be seen as case studies but as normal human beings caught up in unspeakable situations. And perhaps that was the problem of the non engagement of the professionals with the campaign.

Of course, the main reason may have been that we adopted a completely arse about face way of going about it. Not a day goes by without me seeing a call out by some professional group in social care for the input of “experts by experience”. Co-production, working parties, vanguard’s all calling for service users and their families to enter the professionals’ world and share their experience. With the campaign, we were doing the opposite and saying, “Come into our world. Come and co-produce with us”. I suspect that may have been a bridge too far.

Perhaps it was the tone. Someone told me that the campaign “exploded like a ball of fury”. Did it? I didn’t see it that way but if it did, perhaps it scared people off. The fury may have alienated the people we need to bring about change.

One thing that did strike me was the little Stories impacted as much as the big stories: there wasn’t much differentiation. Once you get the human in the stories, it doesn’t matter whether it’s a story about someone in an isolation cell & being fed through a hatch and a story about someone being prevented from watching their Fawlty Towers DVD. I experienced this within me during the campaign. When I watched the campaign film, Stuck In The System, I watched horrific stories of prone restraint, over medication, even death. But the thing that had me howling like a baby was the throwaway line from one mother that it would be “lovely” if her detained son could “just pop in for a cup of tea”.

I think what I’m saying is that whatever the story, it was asking people to take some sort of ownership for the part they are playing in the horror. It’s a big ask. I think it’s too much of an ask. I’m not interested in blame at all. That gets us nowhere. But I guess, if you work in the system and something you have done may be a reason why that dude can’t pop home for a cup of tea, that becomes too difficult to engage with. Only human stories can bring about an engagement but the more human they get, the more they run the risk of complete disengagement.

Yesterday, I was waiting at the bus stop as all these thoughts and questions were running round my brain. Who should drive past but the manager of the Unit where Steven was held for a year. I used to like him. I could imagine him being the sort of person I’d like to go out for a drink with. But back then, I started to see his weakness. I understand that perfectly human weakness but it was a weakness that was going to result in my son being sent 300 miles away for the rest of his life. I used to have a fantasy that I would take the manager out for a drink and get answers to all the questions I have; “Why did you let it happen?” “Why didn’t you speak up?” That fantasy died a long time ago because I can see that the sub text to those questions is, “Why, as a man, as a human being did you sell yourself out?” And that is a grossly unfair question to ask anyone, no matter how truthful it is.

I think that’s what happened with the campaign. The little Stories in Little places, inadvertently exposed that truth.

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From → Social Care

31 Comments
  1. Its not the tone or humanism, it is the simple fact that all these professionals, who work in these units are employed by the units and the system .

    The LD/ASD and indeed all mentally disordered, are now cared for by effectively by 4 monopolies half USA owned, Universal Health Services has now taken over Cygnet and they are cults for maximum profit.

    They seemlessly provide all services from intervention referrals, from primary trusts/LAs who themselves are increasingly privatised in community clinic and health and social care, to Adult Treatment Units, which these monopolies now run alongside/within their ‘community living’ units so local.

    So there is now little distinction between a person’s treatment in an ATU and that in local ‘community living’.

    • I’m not sure I get your point Finola. Surely as a writer one wants to engage people and the tone of the piece is essential to that. When you write one of your blog posts, what are you trying to achieve? And do you consider the tone of your writing in trying to achieve your outcome?

      • No, I do not consider the tone of my writing.

        I write as I feel necessary, to convey what I am saying per se, the audience is irrelevant.

        If they engage, which is what obviously I would like, as the provider of important information is one of my aims, then I am very happy, but I can’t force them.

        More importantly, I am ever hopeful, they will act in whatever way they can, but there is the nub, they are at the systems mercy.

        This, beyond despicable for profit scandal, has been planned since at least the MCA was passed, so now nearly 20 years by all political parties, and it can only change by politics .

        And at the moment, it not even allowed to reach any media, which further serves the longstanding objective of profit.

        Nearly all the now, nearly a quarter of the NHS budget, and most of the LA care and education, is being ploughed in two large monopoly USA giants Acadia and Universal Health and recycled tax free huge profits of St Andrews and none are accountable.

        This will have an increasingly devastating effect on the services and the country’s deficit, so is not about cost cutting.

        And politically no one voted for it, and it should not be happening.

  2. Jayne knight permalink

    When people work in systems that control people they are. I trolled themselves by it. They choose to be controlled by it because that way they can deal with all their own issues by controlling the lives of others. They willnit wish to look at themselves because that’s the very reason they remain where they are going that. To look at why they want to do that would take away the false scaffold they have created around their own misery and so this model will get played out home and time again with the added incentive of being justified in doing that.
    With the risk of offending people who apparently I’ve recently offended that is my personal view. I spent a long part of my life studying this very phenomena at Severallz hospital so instead of criticising that I say these things perhaps you people who feel it’s right to block people saying what they believe ask for that person to discuss those statements and listen for a short while about those beliefs.
    The defending of the medical model corner without taking these views into account only serves to perpetuate a system that neither serves or supports. In my view it suppresses a great deal of common humanity

    • They mainly do it to pay their mortgage.

      The care and health system is now prescribed and the same, so they would have to change career/profession to not behave/ have the opinions/ of the system, otherwise they starve, as we know state benefits are few.

  3. John Basterfield permalink

    Wisely and bravely said, Mark.

  4. simone aspis permalink

    from someone with LDs I find many of these campaigns done on behalf of us are alienating because they do not welcome the involvement of speaking up groups and other people with LDs. I would suggest a new campaign not run by US – The way forward is maybe to START supporting and working on a national campaign with a national org run and controlled by people with LDs – in this case People 1st Self-Advocacy – this way the campaign will not be associated with a group of parents or their friends and chosen few allies. If the work is undertaken by a national speaking up group then the campaign would not be owned by a select few but the many – just a thought.

    • LizzzieD permalink

      Who speaks up for those who can not speak for themselves? I support any move by those who CAN express themselves, and would support their right to say what THEY need – but I am not entirely sure that it is always the same as what my daughter seems to want for herself. I accept that a a parent I can not speak FOR her, but intimate acquaintance does give you some degree of insight into an individual. Do we have no common ground? No-one of good will should be shut out, should they?

  5. simone aspis permalink

    Mark after reading your post again – I can not help noticing again the absence of campaigners and activists with LDs – all professionals again – do I want another academic trying to define my life – no thanks for example

    • Sorry Simone, but that is an incorrect assumption on your part. There were a number of people with LD involved with 7 Days of Action. With the exception of Justice for LB, I cannot think of any campaign that I’ve been involved in that had more LD involvement.

      • I agree all the stories were those of the LD with their consent, it was LD and their parent’s stories written by them, so could not have been more LD driven.

  6. I’m not nearly as familiar with 7 Days of Action than others, so I apologise if I’ve made any unfair assumptions, but I think what Simone is saying is that the blogs etc were written by parents/family carers rather than by people with LD themselves. I understand that many dudes wouldn’t be able to write for themselves, but if the campaign was owned by disabled people, with parents contributing, it would probably get wider exposure and buy-in.

    • The campaign was initially about telling the stories of people detained in ATUs. To get their direct involvement in the campaign whilst they are imprisoned is impossible. Visitors are body searched before they are let in. Contact always happens with staff present and observing. But if you check the website you will see the poetry and artwork and music of former detainees. I think that’s the best it’s going to get.

      • simone aspis permalink

        The whole campaign has been fronted not by people with LDs. I only came across a good video in support of LBBILL campaign done by a local speaking up group by pure accident – doing a google search – the question is how much was that video used to promote people with LDs voices. Whilst it is great that people with LDs wrote their own stories or gave consent to have their stories told – Were People with LDs involved in all aspects of the campaign that included deciding what should be in the Bill, meetings with the Ministers and DOH etc and in the media. If I remember rightly when I asked about getting involved it was all online and I asked how were people with LDs were able to respond when the content of the Bill was being drafted. So where people with LDs involved in the construction of the draft Bill and work around that – okay it was made in easy read which is great – but how far are people with LDs actually involved in giving their views. I suggested that the way to really engage people with lDs is by having face-to-face meetings. I suggested that LBBILL campaign could get in touch with People 1st. I do not want this to become a Justice for LB bashing – that is not my intention – all I want to do is raise to what extent are people with LDs are able to engage at all levels of this and any other campaign about our lives by whoever are the organisers – It does not mean that the same people with LDs must be involved in everything – but there should be representation in all aspects whether that is talking to the media, deciding key messages. I think Do not Screen Us Out does this pretty well – they have some people with DS fronting their campaign and opened up the Parliamentary meeting that I took part in – there were talks by people with DS, those who did not want to take part shared their videos about themselves and what they valued etc. I am raising these issues because Mark wants to reflect on what does or does not work when rebranding the campaign – So I hope all the things I am saying here are being reflected upon before restarting any campaign about people with LDs

    • weary mother permalink

      Jane

      some of our sons and daughters with a voice, have been in the ‘care’ of professionals and ‘others’ for so long, they have learned it is not wise to speak at all – far less speak up. Many others have no voice and even less power.

      Some professionals – are so certain silly – so steeped in political correctness that they would insist that ‘if they don’t ask for themselves they do not want to – need to’ – or ”if mum dad speak on behalf of son daughter they are obstructing their son/daughter’s human rights” (at best)

      Some (few) paid people – may have more sinister reasons for applying political correctness – that is – retaining lucrative employment and or reducing revenue costs.

      Some of the certain same ‘know’ all that is our son or daughter in a few hours contact – and from then – will refuse to see or hear – son, daughter or family.

      The concept of self- actualisation etc – is sound common sense and most parents would foster this for son and daughter at the cost of own health and llves.

      If speaking up by sons and daughters is imposed as the only route, on those who cannot – or is imposed by,daft dogma, chance or more cynical motives – many more sons and daughters will – (without us/family ) will live in fear and misery at best.

      More will die.

      Dogma and certainty should be put on the shelf – knowledge of people – plus common sense – and balance always.is what is needed for our sons and daughters,(and families) to be permitted to speak truth – and to be heard…

      …..and for the people who currently won’t – to listen.

      This,….the most difficult nut to crack.

    • I think this is splitting hairs, to avoid the big truth, that no one is campaigning except for the system, as it is the system that pays the money for campaign and is effectively, in one way, or another behind the campaign.

      How could anyone expect those with learning disabilities, as shown in the 7 days, to create a website, which would be viewed by many, and then write their stories or protest when they are all locked up, and even if they did, what media outlet would cover such protest ?

      I’m afraid it is nonsense that the 7 days was not parent and LD lead. and I am just wondering why it is being argued that it wasn’t.

  7. simone aspis permalink

    Jane absolutely agree with you and you know what we say the same thing at Alliance for Inclusive Education – Disabled people need parents and allies to support our campaign work. Thanks for your support Jane.

  8. LizzzieD permalink

    I think it is a vitally important point that they/we need to come into the world of the person, not try to make the person fit into a world that makes them miserable. Much talk of independence and autonomy, but it is entirely fake – a signifier for cheaper and less troublesome quite often. It is a strange thing to say, but I think my daughter would mind being fed through a hatch much less than not being able to watch her favourite programme. Doesn;t make it less appalling, but she has low expectations of “them”, generally.

    I have always worked on the basis that she wouldn;t last long in an institutionalised setting. It is just so wrong for so many. – and these vital stories have me howling too – with fear and rage at what is being done. I have been fortunate enough to have been able to avoid it, but WHY is it so hard for the professionals to understand the individuality and humanity of our sons and daughters? Much is made of “more training” but when it is one the lines of “people with LD are like this” and this is how you “manage” their behaviour. They are individuals: start from there.

    • If the maximum profit is to be made out of the disabled/autistic, then they have to be treated as commodities.

      It is not about the ‘cheapness’ of their care this is the excuse and big lie that is used on the back of austerity measures.

      The disabled are assessed on the maximum by HSCTs for residential, so the worse their behaviour is made or portrayed, the more can be claimed, and this can only encourage abuse.

      But whilst the maximum is claimed often well over £4,000 a week the actual cost of the care to the provider is cut to the bone as commercial awareness rules ie minimum wage itinerant staff, food on the basis of healthy, minimum outings long shifts , drugged and washed etc

      The autistic/LD are deemed by law to be ‘insentient’ ie incapable, under MCA, that means the system, including all the many itinerant carers, who have no choice anyway, are encouraged to believe they do not know what is going on around them, because of their LD/autism.

      This is the ultimate discrimination and a recipe for abusive care.

      See even Lady Hale’s comment in Cheshire,’ just because a person does not appreciate they are living in a cupboard does not mean it is not a deprivation of liberty’.

      We must accept that the assassins creed rules ie all is allowed to achieve the system’s purpose and that is to make as much money as possible out of the vulnerable.

      • simone aspis permalink

        Lady Hale – always find our judgements sound. I just hope Lady Hale is on a big juicy UNCOPD Article 24 case – Disabled peoples right to inclusive education. Would not mind her on a case involving disabled people right to life (beginning either!)

      • I am not criticising her judgement. I was just saying that she appears, by her comment, that once a person is declared incapable under the MCA, THEY are ‘insentient’ and could not even be aware that they were living in a cupboard. If this is the view of the LD then what sort of treatment are they going to get we are saying they will not be aware of poor care or even abuse and this is the sort of mind set that is being promoted for the purposes of more efficient /profitable ‘care’.

  9. Simone – the post is about the 7 Days of Action campaign not LBBill. The film you are talking about though was suggested and driven by the people at My Life, My Choice. My sense is that Justice for LB definitely walks the talk – when it comes to involvement, it gets it spot on. But back to this blog post – the question I was posing was the lack of professional engagement with 7 Days of Action.

  10. Georgina permalink

    Thanks for this Mark it is interesting to think about why the institutions and people who work in them are often the least helpful, most damming and downright negative for our young people. We have just been through a very frightening downward spiral with our son’s school where they seemed determined to drive him down the path towards Being labelled as ‘unsafe’ to work with. We are thankfully out of that situation but a lot of damage done and he now has that label and reputation so that other local services also refuse to support him. Thankfully we have a service with some great people who saw him totally differently and he is doing brilliantly with them and slowly rebuilding his own and our confidence. The people that really accept and like him seem to be the ‘non professionals’ in our community lifeguards at the swimming pool, workers in Tesco, staff at the library, fellow allotmenteers. We were wondering why that was the other night and wondering why the staff at his school who were supposed to be helping him seemed determined to drive him towards destruction. RD Laing had a theory about families needing scapegoats or people to place blame on maybe something similar happens in services? Certainly got that impression with our son that he became a symbol of a disfunctional system and some where for staff to put their unhappiness and greviences towards.

    • simone aspis permalink

      Georgina – what type of school does your son attend? Why would a school want to drive you down the path that your son is unsafe to work with – awful.

  11. maybe professionals were alienated by too much raw emotion and personal detail regarding individual detentions in the original campaign, zero tolerance as ever of the’ wrong’ sort of engagement .
    Good luck to those taking the campaign forward and success to them in engaging those who are let’s face it not holding their breath for an invitation. Perhaps too much emphasis on too few people came across as a minority group campaign by particularly vocal parents. Not underestimating the difficulties you all faced in pitching the campaign and in sounding the right ‘tone’.

  12. Mrs Strawberry permalink

    I’m not sure that the failure of professional engagement is a failure of 7 Days of Action so much as a failure on the part of the professionals, after the fashion of all the other failiures at their end.

    There is a culture where the professionals know best and anything that challenges that is at best misguided and at worst deemed unsafe or toxic. Absolute arrogance is absolute and will not budge, it’s a closed mindset that nothing can penetrate.

    I have no actual idea what the answer is.

    A couple of things over the last year or two have really shifted my feelings about what can actually be achieved.

    One of those was the death of the son of a lady I worked with from time to time, in not dissimilar circumstances to LB, did not really know her but it brought home to me that even the people who are trying to get these units closed and campainging for people’s rights cannot even save their own kids, god only knows what that must have been like for her.

    The other was my awareness of how badly a well known learning disability rights campaingner was being treated by the staff at her care home, mostly very shoddy and disempowering treatment though there were inklings of worse. Again, she did so much for other people to try and make things better, yet could not even save herself. We are told she suffers from poor mental health and I do not believe that, seems to me her actions are entirely reasonable given the above, talk about having your nose rubbed in it. Grotesque beyond belief.

    I’m actually glad I no longer work in advocacy, towards the end, I had to start asking myself at what point being paid to try and make things better simply becomes parasitic, when you know you’re talking the money and doing a job that is faiing to have much if any impact. Not pleasant at all to realise that you’re been paid and working to preside over failure.

    I see in my Twitter feed today that Luke Clemens is doing more talks. So he gets paid to tell people about their rights under the Care Act, the ones that no-one has seen anything of and that no additional money was ever made available to impliment. A fact which some ‘reputable’ advocacy organisations do not want people to know. I heard that no money was available to impliment the Care Act from a senior commissioner in adult social care before it was rolled out, I minuted that meeting and was asked to redact that piece of information from it.

    So Luke gets paid to tell people about rights they will never see – who is winning and who is losing here? I have no particular issue with Luke, just use that as an example because it’s current.

    Sorry I do not have more positive things to say, in the absence of that, can only hope I have said accurate things.

    • simone aspis permalink

      Mrs Strawberry this is an issue I have with many of these professionals who think they have the answer to our empowerment – I have had a recent exchange of angry postings between myself and DR Simon Duffy – When he asked why there is not the excitement of standing up against institutionalisation – I said it would be time for people like him to STOP doing for US and give people with LDs the space. I am finding it much harder than 20 years ago to get people with LDs voice heard – that is because the space is so overwhelming croweded by non disabled people making a career on the backs of people with LDs. It seems its becoming harder and harder for people with LDs to get their voices heard/

      • Mrs Strawberry permalink

        Simone – I saw Simon Duffy speak at Tomorrow’s Leaders in (i think) 2013 and was very uncomfortable with the man, real Tony Blair type messianic vibe to him, smiles and talks at the same time, the part that I found cringeworthy was when he stood there telling a room full of people with disabilities that what was happening to them was happening because they allowed it.

        What are people supposed to do though? Write to their MP harder? Go to demo’s harder? Chain themselves to some railings? It’s not that people aren’t protesting, and not just disabled people, but nothing seems to happen as a result of it. Can’t even vote out tories while there is no viable opposition.

        Do not know what Simon Duffy charges for that, but he is the only one who seems to be doing well out of it. So a learning disability not for profit funded by LAs pay him to tell disabled people it;s all their fault. Beggars belief.

  13. weary mother permalink

    Mark

    Why is the question you raise at the end of your blog unfair ?

    The familiar answer of ‘ only doing my job as best I can’ can at its most benign… permit harm.

    And currently it is likely to be the only answer freely and willingly offered.

    Loads of academic analyses has already been done on why people can vision up and sanction – then action – pay people permission to do .. inflict little hurts of anxiety, deep stress and misery ….on ‘others; – and then up the scale of inhumanity to the scarring and even loss of lives -, of other people.

    By ‘only doing my job’.

    As now.

    Non sentient dogma and cost is allocated all responsibility and blame for segregating into ‘others’, the least powerful in society. The most benign and undemanding people of all – our learning disabled sons and daughters – are treated as less than human…..as refuse.. even ?.

    Surely with all the energy we have left – we must keep on shouting out ….this questions… ?

    ”How can you do this to other people’s sons and daughters”.

    ‘Where is your humanity’,

    .

    • Well said.

      And why have all the charities , campaigners etc for at least the past 15 years, continually allowed this to happen, so that now it has reached its intended conclusion- remove for life from family and real community, neglect, abuse and drug for ever more profitable ‘care’, and claim increasing guaranteed public money on average over £4,000 a week for life for unaccountable services.

  14. Pauline Thomas permalink

    Our sons and daughters live their lives in a goldfish bowl.

    Everyone sees what they do, no chance for them to cover up any wrong doing. Any covering up is the sole right of the professionals.

    They are never believed when they have a grievance. They are deemed to be unreliable witnesses.

    Therefore anyone who comes into their lives and happen to be a tad cruel have carte blanche to do anything to them without fear of being held to account.

    A family pet has more rights.

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