Tomorrow we have a meeting with the Mazars who have been commissioned by NHS England to undertake the review into all deaths in Sloven mental health and learning disability provision since 2011.
It’s probably worth flagging up some of the CIPOLD findings because they are so off the scale shocking. On average learning disabled women die 20 years sooner, and men 13 years sooner, than the general population. 22% of the sample were under 50 when they died.
Astonishing statistics. And then this:
Despite 43% of the deaths being unexpected, they were nearly 10% less likely to be reported to the coroner. Wow. Howl.
A bit of historical context
I suppose it ain’t rocket science to work out why learning disabled people die earlier or why their deaths seem to be of less consequence than the deaths of others. In 1952, A.F.Tredgold wrote this in his cheerily named Handbook of Mental Deficiency only a few years after the end of WW2;
(Taken from David Race’s Learning Disability – A Social Approach.)
Forty years earlier, University College London set up a Laboratory of National Eugenics part funded by Francis Galton. Galton, who coined the term eugenics, wasn’t alone in his concern about the ‘feebleminded’ breeding like rabbits and decimating national fitness. A genuine fear of gene pool dilution (Wellcome have a fab digi-archive of The Eugenics Society documents which are kind of breathtaking). It was an influential movement for some time (and arguably still is, albeit less explicitly with that pesky term carefully hidden behind layers of more ‘acceptable’ language) involving a range of public figures including Beatrice and Sidney Webb, HG Wells, William Beveridge, George Bernard Shaw and John Maynard Keynes.
We’ve never really moved beyond this perception of learning disabled people as deficient, worthless, burdensome and a problem. Despite a steady stream of policy making and legislative change. It doesn’t matter that there are small pockets of brilliance dotted about the country if most learning disabled people lead constrained, contained and impoverished lives. Waiting for an inevitably premature death. With little accountability. And no imagined future.
So. A meeting tomorrow with the Mazars. Maybe another step forwards in making visible (unconscious?) practices that demonstrate the dismissal of some lives as relevant or human.
Leading to meaningful change? Nah. Why would it?
Thank you for this very important info on deaths.
We do have explore some fundamentals which are dangerously glossed over for autistics.
What is meant by learning disability?
The historic eugenic reference refers to those whose IQ are less than 60.
Autistics, even the deemed low functioning, are, if we could only get statistics, which should be the least NAS could do, usually above this.
They do not have general learning disability ie low IQ, and would not therefore historically,be deemed idiots/ cretins/ feeble minded.
Today the term learning disability is deliberately wrongly attributed to the autistic,to suit the system, which effectively writes the autistic off in schools.
Einstein was most likely autistic. as are a lot of geniuses.
Yet today they would be labelled autistic, and with having a learning disability,and not taught but drugged and made cash cows.
My daughter when NHS diagnosed, was IQ tested at above average, ie she does not have general learning disabilities, yet her head of NAS school deemed she did have general learning disabilities confusing it with a learning disability.
She was then earmarked for assessment in one of the now many CAMHS pathway centres for a 12 week assessment, which merely produces a resipiridone patch for life, with a requirement admission of an IQ of 50 or less
The autISTIC have, like the dyslexic have, a conditioning disorder, not a learning one ie they have to be taught differently.
Todays eugenics is much worse, if the Assisted Suicide Bill becomes law, those incapable can be killed if decided there quality of life is poor, which it will be under state care, and their body parts can be used under the MCA.
A couple of Stella Young quotes:
“I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.”
“While [philospher] Peter Singer, [who has propounded the idea that parents should be given the choice to have their disabled babies killed after they are born] may see value in the life I’m living now, and may even treat me as an equal, he still believes that on the balance of things, parents and doctors should be given the choice to end lives like mine before they get tricky. For me, and for many other people with disabilities, it’s personal.”
The brutal truth is IQ isn’t in the picture. Physical disability on a sliding scale is not tolerated in our society.Learning disabilities ,cognitive issues and barriers to communication will render you an alien species. My daughter was able bodied for 20 years , an artist. After five years of acquired severe disability through disease she was referred to as ‘ an unfortunate girl ‘ by her consultant and lost everyone she had previously known. Our society has a thinly veiled revulsion for disability and the loss of the independent living fund and the bus ruling for wheelchair users will not raise a flicker of debate. I am desperately worried for any disabled person in 2015 striving for basic independence.
The issue is not social distain, but money making out of disability.
Yes, they want them out of society, but mainly because they have seen a huge, perrmenant money making opportunity,, in the euphornism of independent living.
Enforcement via court of protection and the MCA 05 , so it has been planned for a long time by both govs, with collusion of charities .
Once in such living units, the state can then claim all their benefits and rights.
Under the Chronically Sick and Disabled Act they can claim up to 82,000 per year alone, then there is education to 25 for special needs, cares allowance, housing benefit, NHS fund….Mobility…
I can claim 200 per week DLA and carers for my daughter . I cannot even get nappies. we got 10 for christmas.
Once she has been kidnapped to a place of torture and death, at least 3500 can be claimed for her per week.
This is the real reason for no services, as the court will then find it is in her best interests to remove from home,as nothing for her at home, and on paper their provision will look good.
But it is unchecked, zero hour, secret supervision, ripe for abuse in private flats,f with on message PROFIT HUNGRY GP reviews each year .
The disabled are huge cash and pharma cows.
I don’t want to offend by being blunt but the death of a young disabled person is just not seen as untimely. The figures stink and the attitudes stink but I don’t believe there is any appetite for change in the NHS.
So why have NAS spent millions over the years, on campaigns like ‘I exist’, ‘Tolerate difference not indifference ‘. And the latest anti bullying one.
When, they, and the NHS, do exactly the opposite ?
NAS have backed, and built cages for’ independent’, away from family and community living, and the worse form of bullying is to be told where to live, and how, and have your life prescribed, and the NHS expect autistics to die early in care..
I totally agree, in a 2014 major housing development consultation a member of a prestigious society asked the question ” where within the development is the provision for handicapped persons “. No concept of essential,advocated or wheelchair built standards, just where are the handicapped going. Who lives in a house like this ? In the same week a mother is vilified for swallowing one sixth of the annual adaptions budget by refusing to move fifteen miles away to a ‘more suitable home’. The Home Ownership for people with Long term Disabilities sheme HOLD, on the scrap heap with the Independent Living Fund. Leaving LAs holding the cheque book, auctioning service users online to the cheapest provider.
I am focusing my actions on built standards at planning for inclusive communities.
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We’re going backwards. The words are cosy but the state of play is brutal. Helen
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