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Disappearing Words

December 30, 2016

I’m struggling with the vocabulary for this post. As Steven and I approach our tenth year of being trapped in adult social care, I find I can’t use normal, everyday words anymore that have been purloined by Planet social care.

This post is meant to be a celebratory piece about Steven’s growing independence. But I can’t use that word anymore. Independence. It’s become mangled. I know this is rather precious of me but I can’t bear things that are important to Steven being passed through that dishonest, self serving social care filter. I now work on the basic operating principle that the more the social care world trumpet a particular word, the more likely you are being royally shafted. Let’s face it, social care doesn’t really want its service users to be independent. That’s a hugely threatening prospect. Think of all those jobs and culture tied up with learning disabled people and their families being totally dependent on the state’s beneficence. When Steven’s professional “stakeholders” talk about independence, what they really mean is put him in a supported living flat, with minimum staff, serving the needs of as many residents as possible and syphoning the savings into creating more bureaucratic roles.

When I meet a new client now, I’m too embarrassed to say that my training was partly in the person centred model. If they’ve been within ten feet of social care, they’re likely to have a jaundiced view of person centred practice and have probably had their fingers well and truly burned.

I don’t tend to use the word “choice” anymore. That’s been corrupted. I would never claim to be “in control” of anything anymore. That’s disappeared over the cliff too. I wouldn’t dream of “enabling” or “empowering” anybody. So many words have bitten the dust.

Since my last post, “Dad Can Go”, things are accelerating fast. It’s looking like I’m only needed at the weekends and a few hours on Thursdays. Steven is doing so much processing at the moment and for that he needs his own space and time to work stuff through. He doesn’t need a multi disciplinary team to facilitate that. He doesn’t need me or the support workers either. He can do it himself, in his own way.

The other day Steven came up with the perfect illustration of what he’s working through. On Christmas Eve, Uncle Wayne popped in with little Henry. The four men, Steven, Me, Wayne and the support worker sat thoroughly entertained as Henry showed off his repertoire of forward rolls. A couple of days later, Steven wanted to check something out with me:

” Dad. Steven Neary is a man. Henry Keary is a boy? Boys do playing. Men do sensible?”

I think he’s working out, to quote Westlife, what makes a man. Some of it is coming entirely instinctively; some requires some thought. In my mind, it’s about maturity and the wisdom of age.

And that’s bloody perfect.

And it can’t be corrupted by the misappropriation of language.

 

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16 Comments
  1. You have hit the nail on the head.

    All those who are in receipt of public services children, vulnerable adults, prisoners, the old , sick have been made commodities for maximum profit and job creation.

    The actual person the state purports to ‘help’, with the massive amounts of money wasted, ( there is only cost cutting to achieve the state’s purpose), has no voice, let alone independence and is effectively irrelevant.

    • Gill permalink

      Even when the elderly are not getting financial support (or any other support for that matter) those ‘in officialdom’ push them into a corner and won’t let them go. I also cringe at certain words which have become stock phrases. I wonder if they are all rigidly working from an instruction manual. The compete lack of expectation relating to a disabled, elderly, dementia sufferer turned to wonderment when that person happily fed themselves, beggars belief that there is so little expectation. People can be quite capable of feeding themselves, it is not a matter for safeguarding reporting if the person is allowed to be independent.

  2. It’s not just the words that have been hijacked, its the theories behind so many of those words as well. ‘Service user involvement’ was once radical and held out prospects for liberation – it is now a box-ticking exercise that acts as a smokescreen for appalling practices and has been completely deradicalised and co-opted by the ‘service providers’ under neoliberal welfare reform. And as for ’empowerment’ – I share your horror. The present incarnation of ’empowerment’ as used in health and social care is a million miles away from the concept as originally used by the radical pedagogue Paulo Friere. And I note that service users are always merely ’empowered’ as opposed to actually made powerful…

    • simone aspis permalink

      Sally Paulo Friere – who is she or he and what was his or her theory? – explain as we are not all in the know!

      • Oooh sorry Simone – Paulo Friere was a radical Brazilian educationalist who (I think) was one of the first people to use, or popularise, the concept of ’empowerment’. His most famous work was Pedagogy of the Oppressed. Friere was a true radical and I think would be spinning in his grave at how the notion of ’empowerment’ is now being bandied about by a truly oppressive health and social care system…

    • But how are service users empowered, when they have no rights ?

      They cannot complain, because of their communication difficulties/ difference.

      Their family cannot either, otherwise their visits will be stopped, as not in their ‘best interests’ if MCA .

      And, as either sectioned under MHA, or made insentient/incapable of being able to make any decision under MCA, are legally incompetent and therefore can have no legal rights.

      Those representing the service users- OS, IMCA. RRP are state appointed, not family.

      And, it is that state, who have commissioned and paid for the services, so would be liable, if they proved abusive/inadequate.

      So a huge conflict of interests, allowing our for profit services checked only by commissioners, and box ticking state controlled ,not fit for purpose with no effective enforcement CQC.

      So perfect business model- huge sums of guaranteed government money, for effectively doing little but encage and take out in van occasionally, and a sea of ever available itinerant cheap labour.

      Even if years of horrific abuse is exposed ( deliberately), as in Winterbourne View, there are no consequences, except to sell out to another provider for millions profit.

      • It’s not even cheap labour, as many careworkers (for people with LD, MH and CBs) don’t often ‘labour’, but mostly sit around chatting – so everyone’s happy all round – except for the actual person and family who lose in every way.

        Careworkers that do ‘labour’ are those looking after people with physical difficulties needing hoists, or looking after those who can speak and express themselves and are able to have active busy timetables, for example.

      • simone aspis permalink

        finolamoss- interesting post – be good if you can use the full title of the various abbreviations such as OS, IMCA and RRP – so we all will be in the know. Sally thanks – what was Paulo Friere ‘s concept of empowerment that is different from other concepts or being hijacked by the social care system.

      • I think most will or should know Official Solicitor, Independent Mental Capacity Advocate and Registered Relevant Person
        best wishes finola

  3. Normal everyday words quoted (empowerment, person-centred, etc.) have become just sounds for such a long time, as professionals mention them rather than evidence practice – they often don’t help empowerment to really happen. They just seem to just be saying the words.

    They seem to prefer to be making decisions on behalf of the disempowered one, claiming that he or she doesn’t have capacity to decide this or that. And the person who actually knows the disempowered is now only one person out of a team of 10 possibly – although the value they bring is much greater than the whole (not really committed) MDT.

    Our communication is 80% body language, as even a GCSE psychology book tells us, so the Mental Capacity Act must enable Principle 2 to include body language as a valid communication – it is not just through words that we communicate.

    • interpretation of body language is in my personal experience as open to abuse as the spoken word when capacity is questioned. Recording distress rather than pain, failure by nursing staff to use any non verbal pain scales. The awful corruption , the dead meaningless language used and the dreadful meddling in private lives is undeniable. Steven is living his life in his new home , he managed it somehow ! everyone else has to work as hard despite the crap.

  4. Interpreting body language (including nuances of limited speech) should be done by those who know the person best. Not just anybody. Clearly, it’s open to abuse.
    But it’s also abuse to not try and get people’s views at all, simply because they don’t write or speak or communicate in a convenient way.

    Using ‘non-instructed advocacy’ with a ‘witness observer’ approach is the next best thing where there’s no language, as it’s based on observation of clear reactions (such as looking pleased to see someone, or look pleased to see a picture of a familiar place).
    Everyone can communicate something, if given time and opportunity. I see too many generalised and not decision-specific statements like ‘He/she doesn’t have capacity’.
    The challenge is to do the support and collect the evidence as well as possible, not ignore 80% of non-verbal communication.

    • I really hope more people find it possible to bring complaints when local authorities fail to provide independent advocacy and that there are prosecutions. There would be a state of high dudgeon if local authorities failed to fulfil the requirement to keep a register of prospective self-builders/custom builders . Duty holders in health and social care must be prosecuted when they fail to be obedient to equality law so that people are safe when alone in their care.

  5. weary mother permalink

    anyone ?

    Can advocacy be independent if the only option on offer is an advocate from an organisation commissioned/contracted by the LA, to provide advocacy and other Adult Care services ?

    Has anyone brought a successful challenge to this? In the sense of providing an advocate not tied to LA ?.

    also:

    Mark we all know (from our own life experience) that the wonderful progress in security, confidence and behaviour that you see in Steven at present, is down to your selflessness and your knowledge of him plus a committed team of support workers. This is the framework that builds, supports and maintains the complex pile of bricks that is Stevens full and happy life,

    Then..a ‘silly’ speaking evangelist of budget control and ‘self determination’…pops in …and ?

    Gives all a shove ?

  6. Shirley Buckley permalink

    Martin does not have an advocate – he has a Relevant Person’s Representative, who works for Mind. The LA, naturally, refused permission for me to be Martin’s RPR . A RPRs job is to take the dols back to Court, and appeal it. Written loud and clear in the Dols Authorisation. His RPR denies this vehemently, even when I send her the Authorisation. As you can see I challenged first the appointment of the RPR and then that she was not doing her job properly (also non of the forms had been filled out or signed) Charles’ latest recommendation is that a relative should be the RPR, but I haven’t seen this happening. Anyway, in principle I cant be Martin’s advocate – he has capacity

  7. techiebabe permalink

    I’m glad that Steven has been able to develop, to work out who he is and what he wants, despite everything that “the powers that be” have done.

    It must be hard for you to adjust to your new role in Steven’s life. Just know that he loves you to bits, you will always be his dad, and always have a place, even if it changes over time. And as well as Steven, in our own way your readers love you too 🙂

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