I’ve been invited to speak at a conference in a couple of weeks time. For the first time, I’m not being asked to tell the Get Steven Home story. Instead, I’ve been asked to talk about the themes I wrote about on the BBC Ouch blog back in July – Carespeak and the language of the social care world.
I’ve been asked to throw in some swear words to shock the audience. That’s not really me and actually, I find the subject matter pretty shocking in itself. I don’t need to over-egg an issue that regularly has me bouncing from wall to wall with bewilderment and despair.
At the conference, I want to press home the main point, which I feel was lost slightly in the reaction to the BBC article. Lots of commentators focused on a man irritated by a language that he felt shut him out. That is true. But I feel there is a much more important point that needs to be hammered home. More and more, we find that Carespeak actually disguises the real truth of the language. More and more, we find that Carespeak means actually the opposite of what is being said. It is used to hide cuts to services and budgets. And at the same time, it likes to give the impression that the service user is really better off, gaining something by whatever “innovation” is being presented.
Take this story that was left on this blog a little while ago. First off, here is the carespeak statement, sent in a letter to all service users – “we are committed to providing each child with a tailored service which meets his/her needs” What the letter was informing the carers was that children wouldn’t have named workers any more..but if you call, (you the parent are now the worker) someone will pick up the phone…..although there is a high demand… See the anomaly there – “a tailored service” but no named worker.
On Tuesday, I am going to the House of Lords’ committee who are reviewing the Mental Capacity Act. One of the questions is along the lines of – if the MCA is generally supported and seen as a good piece of legislation, why is it reported that there is widespread poor practice?”. To me, the answer is the same as the Carespeak problem – anything can be hijacked to serve a particular purpose. Personalisation, Inclusion, Individual budgets, Person Centred Planning have all been manipulated to carry out an agenda which couldn’t be further from the original concept. If it can happen to those innovations, then it can happen to the MCA as well.
I never want a social care person to tell me I have “choice” ever again. The mere use of the word is an alert that choices are diminishing or non existent.
Norman Lamb is going to be at the conference. I would hope he may be shocked by how the language of the social care world is misappropriated. I don’t want to shock him by saying “fuck” – I want him to be shocked by the reality of our learning disabled people
Love, Belief and Balls 
You a sooooo right- I just hate all that muddling of the truth by slight-of-tongue stuff. So much dishonesty around. Good luck with the conference.
Superb =excellent, superlative, first-rate, first-class, superior, supreme, outstanding, remarkable, dazzling, marvellous, magnificent, wonderful, splendid, admirable, noteworthy, impressive, fine, exquisite, exceptional, glorious. Bloody ‘eck Mark you nailed that one its going in a frame might even use the link as my signature on my emails . The thoughts language and reality of your experience belong to you sadly it is shared by many carers and people who need help with services ,I know if someone tried to control me the only swear word i would consider using is fuck off.
Mark, thank God for you.
Please tell them exactly that. Its the banality of evil and no swearing is needed to shock with this, you are exactly right!
Yes, please tell them the way the language disguises cutbacks, and the way a statement of intent/vision is put in as a SUBSTITUTE for actual service, and is regarded as being the same thing! If the service is “committed to providing the highest standards of XYZ” what is actually provided is not examined. They aren’t told nobody gives a stuff what vision etc they have-what is done/ by whom/ who has responsibility is what we want to know.
Then there’s language designed to alter the function of a service-either by degrees or in one blow.
Example: A service designed to provide ABC rewrites its purpose to: “support clients towards accessing ABC…” Each redefinition of role removes responsibility and redefines the service’s purpose in nice sounding but increasingly vague ways. This makes it harder to hold the service to account.
Then there’s the statement of an aim accompanied with a decision which is the opposite of that aim-like putting “tailored service” with the announcement that children won’t have workers any more. “Quality of life” with the announcement that a popular Day Centre will be closed.
Then there’s the redefinition of day centre closure as embracing independence. A LD person sitting aimlessly in a mall or wandering the streets is seen as a triumph of independence-anyway, if they’re miserable its his/her parent’s fault. And no responsibility for unhappiness is taken-indeed unhappiness is not even measured. The council have their Vision.The reality is irrelevant.
There’s the model of time limited intervention- applied to people who will have their conditions forever. Every service now uses buzz words like “targeted” “intensive interaction””block” “package” to hide the truth that after the contact their involvement will cease, and the LD person will be-cured? Anyway, not their responsibility.Back to the parents.
Also, please please include the immortal “non building based services”-you could offer a prize to the group for who can draw a non building based service or ask if they’d like to live/work in non building based accomodation – or lead them all out into the slashing rain or a bleak or noisy public space (courtyard? Costa?) to enjoy a non building based talk delivered by you. Good luck them balancing their papers etc on their knees…Explain that this is to be their future for the rest of their lives. Encourage them to find a courtyard they like !
Excuse the rant.Good luck, please tell us all how it goes.
Sorry-a final thought-when they are standing outside in the rain enjoying a non building based service, offer them the Choice of going to another bleak spot. Point out that the Choice of staying in the comfy well appointed lecture room isn’t open to them. Invite them to admire how you have opened up their lives with this Choice.
I think the problem with the MCA is the interpretation of it, the lack of training in implementing it and the overuse of it as a overall way of not having to think and analyse a situation for an individual. It homogenises. Please don’t overuse swearing because it will alienate the people you want onboard – best of luck – I hope you get across to the audience what we all need from the authorities -honesty and no carespeak! You are doing something that I wish I could do!
When my adult son, who has no capacity as defined by the MCA – no speech and VERY limited communication was stuck in a rigid ” you are going to the day centre weather you like it or not ” plan decided by the LA and so called “care provider” – because it was a cheaper option for THEM. I protested simply because he was not even given the choice- it was just decided over his head for him. Their answer was, ” why does he need a choice”? This ironically was only a few years ago when that old useless saying was being used so often, ” my life my choice “!!!!!!! Words failed me then as they do now, they are just empty words that will look good on paper for everyone else except the very people they were meant for – nothing more.
Choice: you can have this OR you can have that, but not necessarily everything you need.
Where to start;
Good luck Mark, we will be with you on the day.
We need you to speak out so proudly for you and Steven. No need for swear words to talk about reality for you and for Steven. Really insulting suggestion actually?
Re ‘Social Care improvement’ speak, or blarney:: A biggy, is the ‘Adult and Family Well being’ Service’.
Or rather, the ‘ Big Fat Lie Service’.
The ‘Very bad and Makes You Ill And Very Sad Service’,
The,’We Really Do Not Give a (chose the swear word as appropriate) Service’,
The ‘Parent/family Picking up all the absent Support and Patching all the holes in the (No) Service’.
The ‘We Will Learn From The Mistakes We Made (and have forgotten them already)’. Service
The ‘We (can’t believe our luck) are getting away with shutting every thing and we are still being paid’ (lots). Service.
The ‘We Can Give You No Service At All’ Service, and call it the ‘Something Nice’, Service..
The ‘You are being nasty and hostile if you complain’ (about the ‘No service/bad service etc etc) Complaints Service.
.
Mental Capacity – now what does that look like ?
Where every one receiving a service is reassessed on the run by an officer who has a target of doing this in a time frame,eg in a big hurry, how useful is it as an assessment of mental capacity?
(Sarcasm alert) Well, it can be be very useful I understand. For where there is a focus on reducing costs, and of reducing eligibility post these assessments there have been many miracles. People who cannot read can suddenly deal with complex correspondence, people who have limited speech can become orators in their self advocacy, and people with learning disability and poor health do not need any medical support etc etc etc..
(Naked king alert) And when we/people point out (however carefully), that in spite of all these miracles, vulnerable people (in Costa for example) just look sick and unhappy – deteriorating in, well, ‘Well being’…are we/people just unbelievers having a ‘rant’.
For Mental Capacity has been measured….?
.
I’m with Sally, above. Lead them from their warm and comfortable Committee room to a windswept Parliament Square and talk to them there. Explain that you Remain Committed to a comfortable Committee room but have broadened and deepened their independence by offering them a exciting Choice of windswept venues in the Westminster area in your new non-room based service. Should the windswept aspect prove uncongenial It is up to their parents, be they very elderly or dead, to club together to arrange an alternative by finding, insuring, hiring and staffing a lecture hall on a tenth of the money that was deployed before. Any complaints can be addressed by a meeting in decidedly more warm and comfortable Local Authority offices where someone will Explain how wonderful this scheme is and that it is in no way whatever associated with any budgetary constraint but rather is the Authority Moving Towards a New Vision in Continually Improving Services.
Good luck. Speak for our sons and daughters.
Well said.
Hi Mark – stick to your guns at the conference. I don’t know who’s asking you to swear “for effect” but it doesn’t sound a good idea to me. Everyone’s got their own agenda so keep to yours, which is the right one.
You never want to believe what a local authority person tells you there is a lot of double speak going onas said before their idea of improvement is having no service and leaving it up to parents. As the drop-in in Uxbridge closes at te end of the year and the new service that starts in January will offer two sessions of up to 4 hours twice a week and this is considered as an improvement to a service. What are people with learning disabilities going to do, meet in the Giardinos in the intu shopping centre. This is a group of people that the local authority say do not meet their criteria and therefore do not have a budget to pay for a carer so it will be me a parent providing the care.
One of the other great double speaks is that of communication aids, “accessible communication”.
Easy read, symbols, thumbs up and smiley faces all have come to be accepted as a universal means of consulting event the most cognitively challenged person. They are believed to magically do away with cognitive impairment, turn all issues into clear as crystal, do away with the need for advocates (relatives or – god forbid – paid independent ones). They all have a place and can be extremely helpful but their inappropriate use is actually a form of abuse.
MCA makes much of communication. How can we prevent this continuing malpractice?
I agree.
There are places where the smiley face and other symbols etc can be useful in communication. But the main issue all too often is the lack of attempt know ‘people’, and or the assumptions made, by the same, about ‘the learning disabled’ on the receiving end.
My son who has speech difficulties calls them the ‘silly’ faces. Probably because too often the person waving them at him has not taken the time to know if he understands language, and/or that he is not deaf..
Just as there is this dishonest, life obscuring, language invented to describe less or nothing at all, there has been this growth of new disability careers and products. The ‘training solutions’ that are great fun for delegates, but are more about selling things and having a day out, than improving things. We have all met the careerist with very little experience, waxing on about the next new shiny word or the new and shiny ‘thing that costs us and ours,…… and then fades ….away……………….
No need for swearing – the obscenity is already there in this fresh hell being visited on learning disabled people and their loved ones. On the one hand the state is snatching away essential services, while on the other it finds the cash to fund all sorts of silly ‘jobs’ (transformation facilitators, person-centered co-ordinators, etc) to carry out and perpetuate this obscenity.
Meanwhile, each of us will do lone battle with the authorities. A collective campaign would be better – last week’s victory clinched by those who fought the decision to cut the Independent Living Fund shows that things can be reversed.
On the whole it could just be called the ” No voice – no choice service” as most people with LD without capacity like my son AND no speech have all their choices taken away from them regardless, simply because they have little, or no way way of fighting back.
Great piece Mark. Thank you. Smoke & mirrors.
A classic piece on a similar theme “Politics and the English Language” by George Orwell might be worth a look. One example quote:
“The great enemy of clear language is insincerity. When there is a gap between one’s real and one’s declared aims, one turns as it were instinctively to long words and exhausted idioms, like a cuttlefish spurting out ink”
You can find it here: https://www.mtholyoke.edu/acad/intrel/orwell46.htm
I had no idea Orwell had written on this, what a brilliant quote.
Hello to Mark and all those who are blogging here .. trying to find the words to explain how dizzy all the double speak is making me!
“Choice”, “decision making” and “independence”, used as they are in social care speak, seem to me to deny the existence and legitimacy of those for whom this is not a desirable thing DUE to their impairments. A bit like if we made walking, running, jumping and climbing stairs a universal goal, required especially from those who have mobility impairments. Is there something discriminatory and perverse in this or not?
Making us ashamed of saying but, but, but she goes into a meltdown when you offer her choices… but, but and question independence: to do what, from what? whose independence are we talking about (the Local Authority’s from their duty towards vulnerable adults, more like it!)?. We are all interdependent. I am dependent on others for example, to repair the central heating, diagnose an illness, tell me I am not going totally bonkers, that my rage and fear are the rage and fear of a wolf mother ….
Going out into the “community”. What other groups of people have to go “out there” to buy (if they have the money in the first place) what is not there? accept their needs have just been totally marginalised and told to put in place the services they need (as they have been taken away – eg daycentre closures): pool together and set up an appropriate service because it doesn’t exist. What other “category” of people is being told they can’t spend their day in their office, their college, their university, their workplace, their “community” (eg daycentre) but must instead do it out in The Community?
It seems to me that for people with learning disabilities Personalisation risks meaning that their “protected characteristics” have become totally unprotected! and denied – no clothes …
Bonkers or not?
We are making total sense in an Alice In Wonderland nightmare………powerless? And our sons and daughters are being hurt…….and we are all rushing around madly trying to stop the next hurt… And we must be anonymous………..in order.to prevent what ?