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UN Human

December 3, 2015

Today is the United Nations International Day for people with disabilities. Should we raise a glass or drown ourselves in one?

Last week I was at an event where one of the speakers spoke at length about the McDonald vs Kensington & Chelsea case. This is in the infamous case where the LA changed the woman’s care needs assessment and removed her night time support, insisting she could use incontinence pads instead (she wasn’t incontinent). Speaking to some delegates during the break, it was depressing to hear that this “night time support” arrangement is becoming increasingly commonplace. The Royal Borough set a new bar in cynism and many are following. Often waving the banner for “independence” to justify their decision. We’ve reached a point where many people with disabilities are wrapped up in an independence banner and having to crap and sleep in it.

Following Connor Sparrowhawk’s death at STAT, NHS England commissioned Mazars to carry out a wider review into deaths in Southern Health NHS Foundation Trust facilities. The publication of the report has been delayed repeatedly through the cynical attempts by Sloven to delay the inevitable. The delays convey the message that we’ve known for ages – learning disabled deaths don’t matter because learning disabled lives don’t matter. Who knows whether the report will ever see the light of day. The reputation of the power players is far more important than those bloody nuisances who keep dying.

Last week also saw the news that another Mencap care home has been put in special measures by the CQC. Reading the inspection report it seems clear that Mencap tries to run its homes on the lowest staff numbers it can get away with. Comparing the staff to resident ratios it’s hard to see that the residents can be living anything but barren lives. This also seems to be the modus operandi in many of the much trumpted supported living schemes across the country. Not just the Mencap ones – lots of providers are playing this game. And using the independence banner again to shield their shameful practice.

I find this too bleak for words. Three enormous power players: The Local Authorities, NHS England & the country’s leading charity (“The voice of learning disability “), treating the people it is meant to serve with such contempt. Screwing the disabled to maintain their positions of power.

The message is loud and clear – learning disabled people are not human. The Human Rights Act seldom touches them. Their day to day lives (and deaths) are lived without rights and without humanity. Small pockets fight hard for their rights but the power players trample on those rights.

I was channel hopping last night and came across Tim Piggot Smith narrating a programme about Victorian freak circuses. He concluded with the lines: ” Victorian England needed the three legged people, the elephant men, the bearded ladies to construct its image of itself. It needed to define and display the inhuman in order to define itself. It needed to create the freaks to give itself an identity”. Over 100 years on, isn’t the same thing still happening. The only change is that we’ve become more sophisticated and disingenuous in doing it.

There is a glimmer of hope. There have been a number of court judgments recently that have stepped away from the usual paternalism and recognise the human. I’m thinking of the Mr B case and his refusal to agree to a leg amputation. And this week, the C case, concerning the woman refusing dialysis in order to maintain her “sparkly life”. The press reports of both cases often descend into Freaky, inhuman caricatures but the actual judgments are relentlessly about human beings. The courts are going to places that the power players determinedly deny access to – the human.

It’s a Darned long way from a cause for celebration though.


From → Social Care

  1. So much in this Mark. But I just want to say that I don’t understand why Mencap doesn’t use some of its funds to make the lives of people in their homes a bit better, subsidising the LA funds. And surely they should be setting standards for others to emulate. What are Mencap for?

    • MENCAP , SCOPE and NAS et al, are using ‘independent’ living, to make substantial tax free profit, albeit recycled to their management. The head of MENCAP earns over £120,000 PER year.

      Independent living providers hijack the money, which families and the disabled, are statutorily entitled to under the Chronically Sick and Disabled Act 1970.

      That is over 180,000 per annum, for education, health and social care.

      This is why now over 15 years ago, this removal to independence was created.

      Worse still, they would be claiming on average £3500 per week for each disabled person, on the basis of the severity of their disability, so could be more but are only providing basic services as shown.

  2. If that is what they are doing they should be investigated by the Charities Commission. Awful.

      Read my article here.

      The Charity Commission do not hold them to account, provided they act within their charitable purposes, which are wide, and here they are, and, keep their accounts in order.

      Worse still, I suspect, that MENCAP, may only have been exposed/ given such regulation treatment, because the government, want all independent living, owned by private venture capital monopoly profit, so that private individuals through investments gain, rather then charities, and this also boosts our economy.

      There are many Units, built already but largely unoccupied by companies like Cambian who now own Lifeways etc.

  3. Judy permalink

    Personally I am horrified that the Court of Protection is allowing people to kill themselves……my worst nightmare is a family member’s failed suicide then turning into an actual suicide as the Court of Protection upholds their ‘right’ to kill themselves by neglect.

    • In both cases the judges were following the strongly stated wishes of both people. In fact, in the 2nd case, “C” – the judge decided that C had the capacity to make the decision herself and so only ruled on capacity.

  4. weary mother permalink

    For over a century and very much more good and courageous people have campaigned for all to have the same right to a dignified and fulfilled life. It can appear at present that the only defenders of these values are the families of vulnerable people. And they are treated as the enemy..

    What we have now is a regime of Society and social care, where the people educated in the theory of human rights and the psychology of people, accept status and pay to engage daily in the removal of all humanity and joy in vulnerable others……. and to do it with a certainty of rightful purpose, without qualm.

    Never since people were chosen to live or to die on grounds of race and/or religion has there been such a dodgy doctrine; mass delusion and terrifying misuse of power.

    When history looks back on all this .. will the people as charged be saying again, ‘I was only doing my job’……….

  5. Emma permalink

    Did a double take on the m5 this morning- am sure it was your face on the giant illuminated billboard? Couldn’t read what it said beyond human rights act, but am sure it was you.

  6. Sally permalink

    Hear hear.
    As you say, the independence banner is used, no, brandished ,to cover up appalling service inadequacies.

    “Oh, you wanted to have control of your own life ? Good. We award you control. Starting with no night care. This is not leaving you lying in your own waste to save money ,it is giving you dignity. There is also the vague idea that with an Intervention in this area you will Work Towards nighttime continence. Mrs Snodgrass will be along in a bit to signpost you to continence support charities.”

    Look. Disabled people have extra needs . They need extra help . Much of the help is very specific and easily quantified. Overwhelmingly the help needed is life long.Disability is usually permanent and can’t be magicked away..
    These are John and Betty truths, but I am just back from an inane meeting in which a team of pretty well paid Local Authority execs explained their rationale for the appalling cuts to local services, and I feel these truths can’t be stated enough.

  7. We have had the message “there is categorically no more money for you to live independently”. Three years ago we had the messages “you can be put on the toilet 4 times a day.” “Why does it take you so long to get up in the morning?” “You can be uncomfortable if necessary”. Our own head of social care has won awards: ” Calderdale Council’s Director of Adults, Health and Social Care, have been recognised as one of healthcare’s most inspirational female leaders.
    Bev was named as one of the top 50 women in the country at the latest Health Service Journal (HSJ) Most Inspirational Women in Healthcare awards.”

    I agree not only are our young people de-humanised but there are a lot of people on the “disability bandwagon” making money out of the “care industry” and getting recognition for their innovative ways of working!

  8. weary mother permalink

    Cash, status and power ARE king now. We parents live with fear every day, for our sons and daughters are now just costs.They are the undeserving, unworthy under, under, under……… class..
    Assessments bring fear and intimidation. Upset the paymaster’s chain and the penalties are swift and deadly.
    I can remember fearing that my son would die young and dreading what the future would hold for him, born Downs and different in 1966, when society could be very unkind. But I did not fear Authority for it left us alone and offered us little. No stony faced Dickensian ‘Gradgrind’ then, arriving annually to strip yet another sliver off our humanity; no care manager came calling..

    There was just our unusual lives with mum and dad and brother and sister and many other children/friends;and our life – a family with a beautiful unique vulnerable son, born different from the mainstream.,

    Now he has grown to middle aged adulthood, our always incredible, wise and insightful son has been morphed on paper into a cost. Sans humanity, sans human rights, sans needs, sans sense or feelings. Junked into an inanimate on a balance sheet.

    Brave New World.

    • Sally permalink

      Weary Mother , well said.
      How many times I have read commentators railing about benefit cheats, takers, users, who don’t work or earn. Boris Johnson even gave a speech praising those who earn more as the “Cornflakes which rose to the top of the packet. ” The earners get the praise. The big earners the most.
      Next in line for praise are people who did earn even if they can’t now. Then there are the people vilified as cheats and scroungers.The disabled are not often shoehorned in to that model.
      People pay lip service to the idea that the disabled are apart from these negative judgements. No they aren’t. If people are worth something because they work, earn and rise to the top of the box then, by definition, our disabled people are worth less. What use are they? Why should everybody pay for them? They will never get any better.

      On one level this is what we are fighting. Please pay for these people. Enough for them to have happy lives. I find myself trying to “sell” my son to the outside world and to support services. Please pay for him. Please like him. Even if he isn’t powerful. Even if he can’t support himself.
      And then I look into the eyes of the person with the form and see someone who is wondering why I can’t just shut up and make do with whatever is offered and remember he is bloody lucky to get it.

  9. simone aspis permalink

    Mark which organisation for people with LDs were you referring to in your posting

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