Back in April 2012, I wrote the first post of this blog. It was about the language of social care and how so much of it clouds or excludes. One thing that you have to learn pretty smartish when you ask for support is that the reality is often the exact opposite of what is presented to you and language is the main vehicle for skewing the reality.
Over the years I’ve written loads on this theme. Not just in this blog. Steven’s court case gave me a platform where I’m invited to speak at events or write for various publications and the language of social care is often the bedrock of my talk or written piece. Since 2012, I’ve also become more aware of how cancerous the practice of “othering” learning disabled people is and once again, the language is the first step to turning people into non human objects. Service users in placements. Service users accessing the community. Service users displaying challenging behaviour. Family relationships are not mentioned. Instead you become another name in a circle of support. As I wrote for Rightful Lives, the minute someone is seen as non human, the door is opened to all sorts of unspeakable violence towards them. A death is met with an indifferent shrug and any attempts to present the humanness of the deceased person is only met with more violence. This isn’t an accident. This is deeply embedded practice. A means to justify an dehumanising end.
During the last six years, I’ve been constantly fascinated by the ability of social care to reinvent it’s language but never its values. It’s like that bash the mole game at fairgrounds. In my last blog I wrote about the new housing word for learning disabled people – a Pod. It’s a bluff on many levels. The actual “building” is a cross between a shed and a 1960s Pontins wooden chalet. But obviously they can’t call it a shed or a chalet. They need a new word. A Pod. In a few months time, there’ll be a new word. Whatever it’ll be, it won’t be called a home. Or a house or a flat. A positive behaviour support therapist can live in a maisonette. A social care commissioning manager can set up home in a house. The supported living care assistant can finish their shift and go home to put their feet up in their flat. But check out the care plan for the learning disabled person and it will say, “P’s current placement is a community based Pod”. They could be writing about ET. Even the language for an animal would be more recognisable to the general population – “Fluffy the rabbit lives in her hutch”.
Once the setting for the non human’s residence has been established, everything that goes on within it, follows the same pattern. Nobody cleans their teeth and has a shower. They have personal care. Nobody watches Fawlty Towers with their Dad. They engage in social interaction. And absolutely nobody has a wank. They have private time. Back in 2012, I made a vow. I had been so upset and disgusted at the way Steven was painted in all the court reports, I was determined to redress that portrayal. I know I can be a bit of a pain about it but I refuse to collude. I hope that whenever I write about Steven, his humanness is the striking feature of the writing. I hope the normality of his life resonates. I take my lead from him of course. It wouldn’t occur to him to ask for his personal care when he asks his support worker to give him a shave. I also much prefer his idiosyncratic use of language that swings across several decades within the same sentence. He’s just sorted out his The Proclaimers CD collection and announced the task had been completed with “Craig and Charlie are all ship shape and Bristol fashion”. I find that much more appealing than positive outcome completion. (That’s the phrase they used to write on his “behaviour monitoring log” whenever he made a pepperoni pizza).
Sometimes the two world collide and produce the moments of greatest fear and awkwardness because you’re dangerously entering into exposing the king’s got no clothes on territory. If you don’t use the language or play along with the false reality, dreadful consequences can occur. A smile, a stutter, a silence can be seen as an integrity exposing accusation and violence is never far away. The worse thing I ever did was to laugh at a multi disciplinary meeting. The absurdity and intensity of discussing a risk assessment for visiting his uncle prompted an unexpected snot filled laugh from me and instantly I knew I’d made a major mistake. I was talking about a human being. My son. My mate. They were talking about an object under a laboratory microscope. Everyone around the table could visit their uncle without a risk assessment but that’s okay because they’re human. Steven isn’t. My laugh said as loudly as any words – “Steven is as human as you and I”. But those words can never be uttered because the logical conclusion is – “You’re not needed. You serve no useful purpose”. Who wants to hear that about the job they’re doing?
This week Steven had his six monthly check up with the psychiatrist. It was a rearranged appointment. I missed the one back in October because I was in hospital recovering from a heart attack and forgot to remind the support workers. It was a bit tricky for the psychiatric team. If a learning disabled person isn’t human, then their families don’t live normal human lives either and a heart attack was a bit too real life for them. The elephant in the room for the past 10 years at these six monthly appointments is what the fuck is Steven doing seeing a psychiatrist? You’re plodding along seeing a paediatrician and then, Boom, you reach 18 and because you have a learning disability you are referred to a psychiatrist. It sets the tone for the rest of your life. Humans only see a psychiatrist is they have a mental health problem but you’re not human and a psychiatrist is seen as the best fit. Keeps a lot of people in jobs anyway.
My job for the rest of my life is to keep on keeping on with the human stuff. It’s the only thing I can do and I’m such an obstinate buggar, I can’t stop.
It’s always nice to open up Love Belief and Balls to a guest writer. Today, I feel we’ve taken guest blogging to a new level and it’s with great pleasure and a twinge of trepidation that I hand over the reins to Dame Deidre Trussell, the former head of Newport Pagnellshire’s social care majestum.
Yesterday, an organisation called Heathcotes announced its plan to purloin people’s gardens and build a collection of care pathway Pods where families’ vegetable patches once stood. The full article is here:
https://www.caremanagementmatters.co.uk/feature/business-clinic-27/
These Pods may look like sheds but in fact they are an innovative step down placement that free up much needed beds in the assessment and treatment units that need a necessary cash injection to make sure their hedge fund managers don’t go without a goose this Noel.
It’s fair to say that Heathcotes’ plan has made Dame Deidre go a bit hot under the polo neck and without further ado, I offer this space to the venerable Dame for her right to reply:
“Every now and then a snotty nosed new kid on the block comes along and urinates all over the noble aims of person centred transforming care that I and many others hold dear. What is particularly galling about this latest carbuncle of a care innovation is that it steals an idea that I pitched to the I’m an Autistic, Get me out of here Concordat six months ago.
Having innovated the ethical and person centred relocation of an entire borough’s learning disabled population to the other side of the world, I freely admit to underestimating that a new cohort of learning disabled people would grow up in the borough and clog up commissioning incentives. Unfortunately the supply of discarded wallaby cages in Australia have dried up, so new housing solutions have to be sought. I know there is a call for appropriate placements closer to home but I think that overly paternalistic approach ignores the potential of building a joint community of disadvantaged autistic personnel and emus. I know for a fact that the outdated day centres in Newport Pagnellshire did not have the capacity or skills to facilitate didgeridoo lessons.
It was factoring these brutal realities of the limitations of standard UK step down services that I introduced an exciting innovation at the summer Concordat breakfast over a hearty spread of black pudding and quail’s eggs. My associate, Bob Bibb (MBE) had completed a year long research project looking at the scandalous underuse of porches. Most households leave their porches empty aside from the odd pair of wellington boots and the occasional riding crop. What better way of increasing the nation’s step down options whilst offering perfectly legitimate cash incentives, to encourage people to knock down or convert their porches into a glorious housing resource.
Many observers have looked at the draft designs and dismissed them as nothing more than a skip with a piece of tarpaulin slung over the top and a rope ladder dangling over the edge for access purposes. It may be true that this housing option may have once been a skip but with creative design and a flexible care provision, the possibilities for the service user are endless. The children using this service would only need a smaller garden waste skip, whilst the larger adult would be better served by a more commodious industrial waste skip. We’ve hired the presenters of Homes Under The Hammer to come on board as they are the experts at creating miracles out of a tin of magnolia paint and a sheet of chipboard. The care possibilities combined with the financial savings knocks the idea of a converted shed out of the ballpark. The nation’s fishponds are safe with Dame Deidre Trussell.
Forget Pods. Erase all images of a skip out of your mind. Ladies and Gentlemen, I give you Cups – Community Upsizing Placements”.
I’ve had a weekend long Twitter conversation that has driven me to distraction. Each tweet I’ve written has elicited a response that has absolutely no bearing on what I wrote.
But it’s been that kind of a week. I’m beginning to wonder whether I’ve flicked a switch in my brain where the result is I’m writing something completely different to the words that are in my head. Last week, I scored a hat trick.
An amusing one for starters. My sister text me on Friday morning to ask if I needed anything from the shop. Thinking ahead that Steven will soon start nagging to put up the Christmas decorations, I asked her to pick up a couple of packs of White Tac. Later my sister text to ask whether I wanted them delivered to my flat or Steven’s. I replied, “No hurry. Don’t need them until December. There’s a section of his ceiling where drawing pins don’t work”. She phoned me immediately. “I’ve got you four packets of white Tic Tacs. I assumed you were coming off the nicotine patches and wanted something to help with the cravings”.
A few days earlier the online Sainsbury’s order was delivered. It included one substitution. Steven’s usual bottle of bubble bath was out of stock. In its place, they sent an extra large bottle of talcum powder.
The weekend before last one of the support workers offered to touch up one of Steven’s bedroom walls. I ordered one tin of grey paint to be delivered last Monday. For some reason Wicks cancelled the order and I couldn’t reorder until the refund was credited to my account. I reordered the paint to be delivered on Friday. Around lunchtime the support worker phoned me to check whether I’d changed the order. Instead of delivering a tin of grey paint, they’d delivered four sheets of hardboard. 4ft by 3ft. Currently standing in Steven’s hall. As things stand today, they’re refusing to issue a refund as their records show the paint was delivered.
To round off a week of me questioning my sanity, I was doing Steven’s weekly tape with him on Saturday afternoon. We were having “a massive laugh” because Steven likes to change the lyrics of “Where do you go, my lovely?” to “Where do you go, my Lumley?” in honour of one of the soldier boys in Camberwick Green. During the second chorus I thought “what’s that smell? It smells like paint”. I went to trace the source and found Michael, the support worker merrily painting Steven’s bedroom wall. He’d found half a tin of paint in the shed, leftover from when we decorated in February after finally getting the mould sorted.
I don’t think I’ve lost the capacity the string a coherent sentence together. But I’ll mull it over whilst I’m hammering a Tic Tac into the wall so I can hang the advent calendar. That may be hard work, so I might need a nice relaxing bath of talcum powder afterwards. And then I’m going to build myself a shelter out of four sheets of hardboard to hide in whenever someone on Twitter suggests I need a mental capacity assessment.
It’s been five weeks since the heart attack and three weeks since the diagnosis of urachal cancer. Some of the aftercare has been tremendous. Some has been piss poor. It hit me again today that one area where the aftercare is non existent is around the mental and emotional input after the surgery/diagnosis.
Today I went for my first full session of cardio rehab circuits. Last week the rehab nurse phoned me for our weekly chat. She’s great with a sizeable supply of empathy but the conversation is entirely of a practical nature. (How am I finding the tablets? Have I sorted out my monthly blood pressure checks? Have I increased my daily walk to a brisk pace?) I asked her when I could return to the gym but she said I needed a fitness assessment first. She squeezed me in the following day and decided I was fit enough to join the circuits class.
There were 12 of us in the group: 8 men and 4 women. I was at the younger end of the cohort. The trainer led us through a warm up and then we did a circuit of 12 stations, spending 2 minutes at each. My third station was the trampette. I was semi stepping, semi jumping and I suddenly realised that my eyes were filling up with tears. Nobody noticed and I soon stopped. A couple of stations later and I was doing some bicep curls with 1kg dumbbells. The tears started again and this time they didn’t stop. I think some people noticed but nobody said anything and I think I was grateful for that. I became stuck in a time that was only 8 weeks ago. Back then I was at my gym doing bicep curls with the 17.5kg dumbbells.
I did the rest of the circuit: the stepper, the cross trainer, the bike, the imaginary punch bag. All in all, I quite enjoyed it. There was a bit of a gap afterwards as the nurse took our blood pressure one by one and then laid the chairs out in a large circle. I’m a therapist. I’ve done my share of encounter groups and process platforms. I assumed we’d be talking. Wrong. The personal trainer talked and started a brainstorm about the benefits of exercise. He was a good presenter but after a couple of minutes I zoned out. I started noticing my fellow circuiters. I thought back to the bicep curls and wondered “Who am I now?” I wondered the same about my 11 peers and who were the people we used to be. I feel different so assumed they do too. What has become of our old self image and how is our new one being constructed?
The trainer asked, “How does exercise help our mental state?” My attention returned to the room. I nearly spoke. The woman who outdid me on the treadmill replied, “It can make you feel good about yourself”. The trainer gave her a thumbs up and then the nurse took over and reminded us to take our medication. The group therapy was done and dusted.
Physically I’m feeling fine. Almost back to normal. Psychologically I’m still in no man’s land. Everything has changed and my anchors have become detached. I’m lucky in that I’ve got good friends and family who will help build my new anchors. But it strikes me as odd that you can go through a major life and death event and whilst the time and money is there to attend to the physical, the emotional is completely ignored. We were introduced to their “process timetable” which ran from P1 to P4. The circuits class is P3. I was left thinking that at least the offer of some counselling would make a useful P5.
No Ps for that. Blood pressure – good. Cholesterol – excellent. Head – fucked.
Following the decision to cancel all future series of Big Brother, Channel Five’s head of commissioning has approached Dame Deidre Trussell, the government’s newly appointed Social Care Conscience Csar. Deidre received her damehood for her innovations whilst head of Social Care at Newport Pagnellshire council, namely her ground breaking person centred scheme of relocating all the borough’s learning disabled population to Gravesend, New South Wales. Commentators have hailed Deirdre’s success at combining maximum efficiency savings with her committment to deprive 1369 of the most vulnerable but costly citizens of their liberty. On the other side of the world.
Dame Deidre is brimming with passion about her new reality TV project. Her aim is to change the hearts and minds of the viewing public to see the celebrity patients as empathic professionals and not the complete narcissists that is the current public perception.
For the duration of the programme’s six week run, a group of 10 of the country’s leading social care heroes will be cut off from their daily grind in one of the nation’s first class assessment and treatment units. Each day, you the public will choose via the “hatch app” an inpatient to be the subject of the day’s “Complex Needs Conundrum”. The other nine patients will be presented with the conundrum and have to decide the most restrictive option for the selected patient’s care. Any contestant refusing to cooperate will be pinned down by our four nurses (Shadow, Warrior, Trojan and Wolfman) and be injected with a gallon of antipsychotic cocktails.
We’ve got a mouthwatering cohort of service users: 4 CEOs, Tony (Cygnet Healthcare), Jan (Mencap), Ian (CQC) and Katie (St Andrews). 2 Directors: Raymondo (National LD director) and Sir Steve (Charity Futures). 3 of the UK’s top Responsible Clinicians: Bawa, Valerie and Ashok. Finally, the real feather in the casting director’s cap, Matty, the Secretary of State for health and something or other.
Meet the care champions:
Today’s Complex Needs Conundrum:
Jan has been promised for the past week that today she can have an off site visit to go sailing on her old buddy Katrina’s boat. Unfortunately there has been an overspend on the claret budget and the Trust cannot afford the staff required to support Jan in her community programme. Jan is extremely upset.
The nine remaining patients have to decide which of the following two options will best meet Jan’s complex needs. Either:
A. Sacrifice their performance related bonus this month and use the money to engage two agency staff to facilitate Jan’s personal development.
Or
B. Send Jan to the seclusion room for 48 hours with a social story about “Adjusting Expectations”.
Tune in tomorrow to see what becomes of Jan.
And don’t forget to vote in our poll “Has your heart and mind budged an inch?”
I’m going to try a little experiment. It’ll be a short post.
I was in the queue at the Tesco delicatessen counter this morning when a woman at the front of the queue raised us all from our slumbers:
“I’m going to call a spade a spade. That isn’t haslet. By nobody’s reckoning could you call that haslet. It’s an abomination”.
She walked off and said to the chap in front of me: “I’m too old to mince my words. I call a spade a spade”.
This morning, a long time Facebook friend posted an appalling picture. Her son has been living in a residential school run by the National Autistic Society. With little notice they decided that the school could no longer meet his needs and moved him immediately to an assessment and treatment unit. To prepare him for the move on the same day, they constructed a social story. Here it is:
Taking my cue from the woman at the delicatessen – this isn’t a social story. It’s an abomination. It’s manipulative abuse. The last sentence is especially chilling. They are spinning his experience. Just suppose his experience at the ATU isn’t okay. Where does that leave him psychologically? “They’ve told me this is okay. This doesn’t feel okay”. As his new home will possibly involve lots of medication, physical restraint and hours in seclusion, is it okay for the NAS to try and programme him into compliance.
Let’s be frank, whoever wrote this social story wasn’t thinking about Linda’s son at all. It was done so that the school could feel better about themselves. A gloss to cover their shoddily abusive practice.
When you think so little of the people you’re meant to be caring for, then anything goes. The unit that Steven was unlawfully detained in went in big time for “subliminal messaging”. Changing the words Steven used to describe his home from “the Uxbridge house to Dad’s house” to try and detach Steven from his concept of his home and make him more accepting of being moved 250 miles away. And expecting me to buy into this deceit. I could give many examples of their attempts at subliminal messaging and every one made me heave.
It’s probably a coincidence but since the Rightful Lives exhibition, there has been increased attention from the press and media about the human rights violations of people with learning disabilities and autistic people. That is encouraging and even more encouraging is the reluctance of the media to accept the usual spinning. The old get out clause of “extremely complex needs” is coming under greater scrutiny. Someone’s needs may be complex but does that warrant them being fed through a hatch.
But I digress. In another Twitter conversation yesterday, I was reminded of the “Levels” system used at St Andrews to facilitate a patient moving to a less restrictive regime. I published these pictures before but here’s a reminder of what Level 1 (the lowest level) looks like:
More lies. More violations. Completely service led. Imagine getting to Level 4. You might be assuming this is an upward trajectory towards discharge. And then low staff members means your long awaited trip to see Northampton FC play is cancelled and in one fell swoop your disappointment is used to send you plumetting back to Level 1. These are the games that are played daily if you’re being assessed and treated at £13k per week. One minute you’re trying on your replica football shirt; the next minute your arse cheek is full of rhispiridone and you’re eating your dinner through a hatch. Because the £13k didn’t stretch to 2 staff being made available for a 90 minute football match.
But don’t worry people. Because in the words of the National Autistic Society – “This is okay”.
The total shits.
It’s funny talking about death. When I wrote my death plan two years ago nobody wanted to talk about it. Friends would cut me off mid sentence and change the subject to something more palatable like the career of Harold Melvin & the Bluenotes. But one week on from being told I’ve got urachal cancer and everyone wants to talk about it. When I went to pick up my Tuesday doughnut earlier I half expected the manageress at the bakers to ask me how I was getting on with my lasting power of attorney.
I don’t mind. There are things that need discussing. Especially whether Harold Melvin & the Bluenotes’ version of Don’t Leave Me This Way is better than The Communards’ version. The support workers’ thoughts have been focused on a future without me around. This as a category covers a lot of ground. From what crisps to put in the cupboard for Steven’s Thursday afternoon snack to what provisions need to be in place to stop Hillingdon dragging Steven from his home whilst the bolts are being screwed into my coffin.
Steven has two categories of jobs – Big Jobs and Little Jobs. A big job covers putting his clothes into the washing machine whilst his bath is running. A little job might be putting a Twix wrapper in the bin. I’ve taken a leaf out of his book and divided my tasks into Big and Little jobs. I knocked a little job off this morning and presented the support workers with a schedule of the daily crisps. In case you’re ever tested on this the Thursday crisp is a packet of steak McCoys.
Because a large part of Steven’s life has been spent making preperations for the future which by and large I’ve accomplished, there’s really only one Big Job still to do. I’ve got to make it to my 60th birthday next March. In responding to the support workers’ concerns about Steven being kidnapped, I’ve drawn up a contact list for them of every barrister, lawyer and advocate I’ve met over the last eight years. It’s a long list but I’m reasonably confident that enough of them will spring into action if the worse happens. On my 60th birthday I receive my substantial works pension – enough to cover the costs of a liberty preserving legal action. My last job. But probably a necessary one.
One thing that keeps me going is the knowledge that Steven’s got his priorities sorted. If faced with the choice between engaging a Doughty Street barrister for himself or going to the shop to buy his Saturday Quavers, I know which task he’d classify as the Big Job.
And he’d describe himself as “massive happy” if he was allowed to sit on his sofa munching his Quavers whilst having a Harold Melvin music session.
