Buses, Bad News and Bank Holidays.

Tags

#107days, (un)accountability, buses, Down syndrome, Special Needs Education, true stories

I hadn’t intended to post this week, what with it being half term, but this story seems timely.  It comes from London, the land of LB’s beloved red buses.

Myself, I have a bit of a love-hate relationship with London buses – the old Routemasters were an almost fairytale part of my childhood, associated with Christmas trips up to Town to see the lights in Regent Street, meet Father Christmas in Selfridges, and buy hot chestnuts from brazier-barrows.   On the other hand, when I lived in London, and had a complicated journey to work, it was axiomatic that one would wait ages for a bus, then several would come along at once, and not a single one of them able to get you there on time.

Buses aren’t the only things that cluster, of course.  Superstition says that troubles come in threes – and not just British troubles; as the French proverb says, “Jamais deux sans trois”.  So I suppose I shouldn’t have been surprised, after I posted the stories of Dude Chris and Dude David, that I was sent another, about Dude Abdulkarriem Al-Faisal.

Dude Abdulkarriem lives in North London.  He is 19 and attends Haringey Sixth Form Centre.  And one Friday, he left his favourite basketball cap in a classroom.  I don’t know how much of a fuss he made about this.  Maybe he kept reverting to it, as dudes sometimes do when things in their world are out of kilter, or maybe it wasn’t the first time he’d left something behind at school, and he was cool with the idea that he would get the cap back the following week.  Unfortunately for Dude Abdulkarriem, that particular weekend was a Bank Holiday, so it lasted longer than usual.

Abdulkarriem, however, is a resourceful dude.  When Monday came along with no classes, he decided to retrieve his cap anyway, slipped quietly out of his house and set off for school.  He made his way there without mishap and found a window that he could climb through.  Which he did, setting off the alarms.

Meanwhile, the Al-Faisal family had realised Abdulkarriem was missing, and were out searching their local streets for him.  After two fruitless hours, frantic with worry, they phoned the police to report his disappearance, and were told that Abdulkarriem was being held in police custody for questioning, having been arrested at the school.

His mother went to the police station, where she found Dude Abdulkarriem in a cell: confused, in tears, and minus his shoes and coat.  He had been handcuffed after his arrest, and subsequently fingerprinted, swabbed for DNA and all his details entered into the UK National Criminal Intelligence Database.  He told his mother that he had been kicked by the police officers, forced to the floor, and that an officer had put a knee in his back; which sounds like face-down restraint.  

It took nine hours, and the intervention of a lawyer and the school’s Head of Disability and Learning Support, to get Abdulkarriem released, and only after he had accepted a caution for burglary.  Although a caution is not a conviction, it does form part of a person’s criminal record.  It can be used as evidence of bad character; it shows up in disclosure and barring (CRB) checks; it can prevent a person from being able to travel to some countries that take a dim view of anything less than squeaky cleanliness in prospective visitors.  Cautions are supposed offer a swift, proportionate response to low-level offending where the offender has admitted the offence, and are a convenient way of reducing the burden of procedure and paperwork on police and courts alike.

A caution, once administered, cannot be appealed.  The only way to have it set aside is to challenge the caution via Judicial Review, but that has to be done quickly.  Any application to the court for Judicial Review has to be made within three months, and before you can make a claim, you have to notify the police of your intention and the grounds for your claim, and give them a chance to rectify matters first.  The time-frames for sorting things out are very tight, but if the police refuse to do so, the court can order the caution to be expunged from the record, along with fingerprints, DNA and any other information.

For a caution to be correctly administered, the police must be certain that:

– the evidence of guilt would give a realistic prospect of conviction at trial;
– the offender admits the offence;
– the offender understands the significance of a caution and gives informed consent to being cautioned.

If evidence does not meet the standard normally required for a prosecution, a caution cannot be given. A caution is not appropriate where a person does not make a clear, reliable admission of the offence, or if they deny intent, or if, owing to their mental health or intellectual capacity, there are doubts about their ability to give informed consent.

Perhaps the police didn’t observe anything that would give them reason to query whether Dude Abdulkarriem had the necessary intellectual capacity.  If that’s the case, I fear greatly for the detective powers of the Metropolitan force, since Dude Abdulkarriem is visibly chromosomally advantaged.  And even if the police did fail to notice the obvious signs of Abdulkarriem’s condition, they must have been made aware of it by his family, teacher and lawyer.  Dude Abdulkarriem carries an extra chromosome, and he has the distinctive morphological and facial characteristics that go with having Trisomy 21.  Characteristics that are easily recognised by just about everyone, since T21 is the commonest chromosome disorder.

It is usually known by the name of the doctor who first formally described it.

Down Syndrome.

 

Days, Dudes, Doom and Drops of Brilliance.

Tags

#107days, care in the community, kindness, LB's Justice Quilt, Prader-Willi syndrome, true stories

Another day, another LD dude in difficulties.

Today it’s Dude David, who has Prader-Willi Syndrome.

PWS is caused by the loss, or failure to function, of a tiny region of Chromosome 15, so it is sometimes known as a ‘microdeletion disorder’.  The relevant genetic region may be minuscule, but the effects of it being unable to work are HUGE, literally and metaphorically.  The missing or non-working genes code for controlling the production of a hormone called ghrelin, which tells people when their stomachs are empty and they need to eat.  People with PWS vastly overproduce ghrelin.  By a miserable twist of ironic metabolic fate, they are also unusually sensitive to another ‘hungry hormone’, insulin, and are resistant to the ‘had enough’ hormone, leptin.  They never feel full and are always hungry.  Really, really hungry.  Stomach-gnawingly, raid-the-fridge, where’s-my-dinner hungry, even if they have just eaten a large meal.

Given the chance, people with PWS can literally eat themselves to death.  Some become so enormously obese that their health collapses and their body gives up.  Others who have got unexpected access to food have eaten so much that their stomachs have burst, and they have died of organ trauma and internal bleeding.  Given money, they will buy food in massively excessive quantities and consume it all at once.  They will eat discarded food from bins, still-frozen food straight from the freezer, and non-food items, because of their overwhelming need to still that ever-present, unquenchable hunger.

Families of people with PWS learn to live with locked food cupboards, chained and padlocked fridges and freezers, even locked food-waste bins.  They learn ways to distract the person with PWS from seeking food, and from indulging in the skin-picking and self harm that many people with PWS use as a diversion.  They know that love is … cooking rigidly calorie-controlled meals.  They eat their own meals to a schedule and forgo snacks – except in secret – to avert melt-downs in the affected person.  They manage pocket money to ensure that spending opportunities do not include food items.  They make sure that the person with PWS follows a rigorous exercise programme (PWS also lowers muscle-tone, lean body-mass and metabolism, so not only do affected people feel hungrier, they also burn off anything they eat at about half the rate of a typical person). They give the daily growth hormone injections that can help the person with PWS build up lean, rather than fat, tissue.  Family members deal with the intellectual differences that come with PWS, learn how to answer fifty-times-repeated questions (‘perseveration’) and to cope with difficult behaviour kindly and patiently.  Families set inviolably firm boundaries, but with gentleness.

Then their dudes grow up….

Dude David wasn’t keen on moving into a place of his own when he turned eighteen.  He wanted to stay at home with Mum, but over the following two years or so, his care manager persuaded him that his own supported flat would be a good place. The flat was beautiful.  Dude David got to decide how to decorate it and to fit it out with all the things he wanted.  It was perfect.

The support package, however, was a disaster.  Staff didn’t manage demands due to Dude David’s hyperphagia (compulsion to over-eat) well, so he rapidly gained a great deal of weight.  Their failure to understand and respond properly to his needs led to a marked deterioration in Dude David’s behaviour.  After only ten months, social services decided the flat wasn’t appropriate after all and took it back.  Neither of the alternatives offered was tailored to Dude David’s needs: local residential provision was not geared up for PWS, and all the specialist provision was miles from friends, family and familiar support.  Dude David’s mother rightly insisted that his emotional needs be given priority after all the upheaval and upset, so for now Dude David is in the local residential home, while his gorgeous, barely-used furnishings languish in storage.

Two years on from his original move into the flat, there is ‘hope’ that a specialist supplier will be creating a properly-tailored service for Dude David ‘at some point in the future’, but no word as yet on firm undertakings or timelines.

Sigh.  And sob.

It was precisely because I have heard so many of these doomy-gloomy unhappy stories that I wanted my contribution to #JusticeforLB to be something positive, and so adopted Day 28 of #107days of Action for ‘Drops of Brilliance’.  I hoped that enough stories might come in to make a little book of examples of everyday good practice – maybe even 107 examples.  Some fabulous stories came in – of a teacher who noticed the achievements rather than the shortfalls, of support staff who achieved the Never-before-attempted – and On Ice – by refusing  to admit the word “can’t” into their vocabulary.

But so far, there have been fewer than half a dozen contributions.  I’m loath to believe that I, by myself, can find more sad stories than all the rest of you, amongst yourselves, can find inspiringly brilliant ones.  So I’m challenging you to cap the following post-within-a-post story, with even better ones of your own.

You can leave your own Drops of Brilliance as comments on this blog or add them to the comments at #107days’ Day 28 here.  And your starter-for-ten Drop of Brilliance iiiiiiis:

The Taxi-Lady Comes Up With A Belter.

Grenouille has to wear a medical device that attaches to the body and delivers continuous life-supporting medication, twenty-four hours a day, seven days a week, fifty-two weeks a year.  In order to avoid site infections and skin breakdown, the device has to be moved around every three days.  G’s taxi escort noticed that on some days, G seemed to be finding it uncomfortable, and realised that the car’s seatbelt was pressing into the repositioned device.  Now she checks with G every morning as to where the device is today, and makes sure that G gets to sit on the side of the car where the seatbelt won’t touch it.

Simple.  Thoughtful.  Kind.  Brilliant.

Go on – top that.

Meanwhile, I’m working on my patch for LB’s Justice Quilt.

Of Frogs and Men

Tags

#107days, #justiceforLB, adult LD services, institutions, Local Authorities, true stories

At their various playgroups and nurseries, Eldest and Grenouille used to sing a song about frogs.  Well, actually, they used to sing several songs about frogs, but the one I am thinking of went

‘Ah-um went the little green frogs one day
Ah-um went the little green frogs
Ah-um went the little green frogs one day
And they all went ah-ah-um
Now we all know frogs go wye-aye-diddly,
Wye-aye-diddly, wye-aye-diddly
We all know frogs go wye-aye-diddly
They don’t go ah-ah-um.’

Eldest, at three or four, found this mildly amusing, since we all know fine well that frogs go neither ‘ah-um’ nor ‘wye-aye-diddly’; Grenouille simply accepted it with the sort of pragmatic philosophy that G brings to bear on most of the incomprehensible things that the wider world presents, and both of them left it behind them when they went to school.

However, it was brought to our notice recently on a visit to family; Wee Cousin was treating us to his repertoire of Cub campfire songs and this was one of them.  “Oh, I remember that one!” I said, as Wee Cousin struck up, and indeed, I did, except that in the Cubs’ version, the frogs go ‘Blup-blup’ instead of ‘Ah-um’.  There was slight difference about the chorus, too:

“Now we all know frogs go ‘Squelch!’ when you step on them….”

G and Eldest were both reduced to helpless giggles, mainly owing to Wee Cousin’s enthusiasm in accompanying every ‘Squelch!’ with a vigorous stamping action that involved both arms as well as his feet, but my sister was mortified.

“Oh for goodness’ sake, must you sing those gruesome ditties when we’ve company, you grisly child?”

Big Cousin observed,  “We sing it in Scouts as well, Mum.  Me and my mates reckon you can tell who needs keeping an eye out for, by watching for the ones who are too enthusiastic when it gets to the bit about, ‘Now we all know frogs go ‘Whirr!’ in the blender.'”  He grinned at his mother’s expression of resigned horror.  She rolled her eyes upwards.

“And these are supposed to be organisations that channel their energies productively!  Tchah!  Boys!” she said, with fond maternal loathing.

If people who are excessively enthusiastic when singing about frog-destruction need to be watched out for, what sort of an eye needs to be kept on a person who will eat a live frog?  Even a fourteen-year-old Scout can tell you: a very close one.  And would probably add, “Plus, this person will need a lot of help to channel their energies productively”.

This is the current situation of 21-year-old Dude Chris, who has been determined, not merely by a Scout, but by the High Court, by a Mental Health Tribunal, and by a report from a Local-Authority-commissioned Independent Social Worker, to need an exceptionally high level of care.  This includes access to a private, suitably-equipped outdoor space to let him be active, as young men need to be.

Dude Chris has  been diagnosed as having severe autism, severe learning difficulties and a severe speech and language deficit, which means he doesn’t speak, although he communicates non-verbally.    If he is not offered suitable activities and stimulation, he self-harms, and has caused himself disfiguring injuries.  While in hospital care, he has been physically and emotionally abused by staff, and more than once.  Two years ago, he was the subject of a serious Human Rights abuse case in the High Court.

He is currently in a Mental Health Unit.  Here, instead of the sensory garden that he was promised (in front of a Judge, no less) he has an enclosed, barren bogland to wander in.  The equipment that his family provided for the garden has been removed by the ‘clinical team’.  Dude Chris does what he can with the space: roams around, pulling up and chewing plants and mud.  And recently, he caught that unfortunate frog, and ate it alive.  The rest of his time he spends, under-occupied, over-medicated, bored, frustrated to the point of outbursts and subjected from time to time to face-down physical restraint, in a locked flat.

The Local Authority and NHS Trust know that this is not satisfactory, and they want to move Dude Chris.  His family have found a bespoke housing provider, and specialist support organisations, that would be happy to help Dude Chris to live locally, in a safe, stimulating home of his own, close to his family and friends, with the facilities and support he needs.  But the public organisations say that these proposals are ‘unhelpful’.  They want to put Dude Chris into a secure hospital – another distant, closed, collective institution where he will be out of sight, out of mind, and arguably at risk of more of the abuse he has already experienced.  This is the authorities’ preferred solution, despite the fact that the hospital will cost more than the tailored home care.

Dude Chris’ family have poured their time, their love, their money, and the blood, sweat and tears of their hearts’ courage into trying to get him the provision he has been, repeatedly, promised.  They could do with a little support, which you can help provide through Chris’ Voice UK and the linked change.org petition.  Two clicks, that’s all.

For Dude Chris; in memory of, and in Justice for, LB: First Dude Amongst Dudes.

Thank you.

The brothers and the beer money

Tags

#107days, adult LD services, care in the community, learning disability, local authority, schoolroom centre stories, true stories

This post is long, but try as I may (and I’ve been trying for a week, now) I can’t find a way to split it into smaller chunks that will still be authentic.  Despite what I said yesterday about stories needing to be shaped, sometimes true stories just flat refuse to slot obligingly into a conventional space.  Unlike stories made up from imagination, whose characters and events can be chopped and changed and turned inside out to fit, the real people in true stories demand, and are owed, their due place.  In writing, as in life, the Soutar brothers have stubbornly resisted attempts to cram them into a predetermined pigeonhole.

It took me some after I joined the schoolroom centre to be sure which of the brothers John and Alec I was addressing if I saw one of them on his own, and I wasn’t the only member of staff to find it difficult.  When they were side by side, you could see that John was a little more pinch-faced and sharper-featured than Alec, but when they were apart, it took a moment or two to be sure.  In spite of their peas-in-a-pod-ness, the brothers were not twins.  John was the elder, and he was far more taciturn in manner.  Most of the time, John was barely monosyllabic.  When you spoke to him, you were lucky to get an “Iphm” in return.  Alec wasn’t what anybody could call talkative, either, but he was more excitable than his brother, and could appear aggressive if he thought he wasn’t being listened to.

As young men in the 1960’s, both brothers had worked as labourers ‘doon at the docks’, helping to shift crates and sacks of cargo, and sweeping out warehouses between consignments.  Alec enjoyed the occasional reminiscence about incidents from his working life: “John, d’ye mind on the time when….?”

“Iphm”.

Containerisation had been the death of manual jobs on the docks.  As Alec put it, ‘wan loon wi’ a crane, workin’ by his lane self’ could move volumes of cargo that had once required hundreds of pairs of hands.  As I understood it, the brothers had been out of regular jobs ever since.  They shared lodgings and a mutual atmosphere of simultaneous solidarity (against the rest of the world) and intermittent antipathy (between themselves).  Like all the trainees, they survived on Housing Benefit and Income Support, or ‘the Broo’, as out-of-work benefits are known in Scotland, from the days when the payments were dispensed by the Employment Bureau.

Having had a working life, neither of the brothers was taken in by the ‘pay packets’ handed out by the Centre.  Alec especially made no bones about finding it insulting that the Centre should try to kid him on that an amount that wouldn’t even buy you a pint of heavy, was a week’s pay.  He took the money, of course; for people as close to the breadline as he and his brother were, any cash was welcome, but would mutter about when he had been doing a real job for real wages.

“Proper man’s work, proper pey, no’ sweetie money fur bairns.”

The ‘pay packet’ was a repeated insult to Alec’s self-esteem, and we staff were careful not to offer further injury to his pride.  We made sure to let him know that we had heard and understood him, by repeating his own words (or a paraphrased version of them) back to him.  We didn’t try to persuade him if he was resistant, and if we wanted him to do something, we would frame the request as him doing us a favour.

The supervisor had no truck with such an approach, and on her – mercifully infrequent – visits, freely castigated the brothers as ‘that lazy pair’.  She would demand to know why they were loafing about with their hands in their pockets instead of sanding down desks (or whatever), as they were supposed to be.  John simply turned his back on her, but Alec would be spitting with fury after she left: “Yon bitch ca”s this work!  She widna ken work ef it bit her erse!  Ah’m a workin’ man, Ah’ve daen proper man’s work! Proper man’s work fur proper pey!  Ah’m no’ takin’ orders fae that bitch o’ a wumman!”

“You’re not for being told what to do, and I’m not for you getting away up to hi-do and roaring about the place.  Maybe if we put our heads together, you could help me find a way to sort the problem, Alec?” said the manageress, thoughtfully.  “What if…. ”  She called over one of the male care workers, Dave, and they went into huddle with the brothers.  To judge by the cackling, whatever was being plotted appealed strongly to the brothers’ sense of humour.

“So we’re agreed, then?” said the manageress, as she emerged from conclave.

“Oh, aye, mistress!” said Alec enthusiastically.  “An’ ‘hank you!”

The manageress laughed.  “She aye comes and nips my head after she’s clapped eyes on you two; if she doesn’t see you, we’ll all get some peace!  You’ll be doing me a favour.”

“Oor pleasure!” said Alec, gallantly.

“Iphm!” said John, sounding as unimpressed as ever, but he looked slyly amused.

Thereafter, the supervisor’s arrival was the cue for Dave to remember that it was time for the brothers to ‘return that video’, and they would all put on their coats and exit nippily through the side door.  The video shop was next to a little cafe, where the three of them could sit at the back by the counter, drinking tea out of thick white mugs, while the brothers smoked the poisonous skinny roll-ups they favoured and ran surveillance on the Centre entrance.  As soon as the supervisor’s car drove away, they would saunter back over, grinning conspiratorially and evidently buoyed up by having got one over on authority.

Alas, a video swerve wasn’t possible the day that Alec came in with a letter from ‘the Broo’, which he couldn’t read.  In convoluted officialese, it summoned him to an interview to answer allegations concerning infractions of benefit regulations.

“Do you have any idea why the Broo want to talk to you, Alec?” asked the manageress. Alec didn’t, so she let him go into the workshop and phoned his social worker.  The social worker had no information either, but undertook to make enquiries and said he would accompany Alec to the interview.

The manageress frowned.  “Dave, you’ll need to walk Alec down to the DSS.  If he thinks he may be in trouble, he’ll just go AWOL and then this stushie will only get worse.  And I want you -” she swung round on me – “to go with them and keep tabs on what’s being said while Dave deals with keeping Alec calm.”

We walked down to the DSS office on the appointed afternoon, with Alec muttering apprehensively between us.  The social worker met us at the office doorway, his face sombre, and we climbed the stairs to the big, dusty-grey, crowded waiting room with the glassed-in interview booths at the front.  The social worker took a numbered paper ticket from the circular red dispenser and after a long wait, the indicator machine clacked over to Alec’s number.  We crowded into a booth, but when the DSS clerk saw the letter, he buzzed us through a door at the side into a sort of corridor lined with more booths, and directed us to one of these for a ‘private’ interview.

Another DSS clerk appeared behind the glass, shuffled papers, and then laid out what can only be called the case for the prosecution.  Alec, it seemed, had been seen working in town, and his benefits were going to be docked.  Mr. Soutar, said the clerk, had a prior record of transgressing the rules on casual working.  She addressed Alec loudly and distinctly.

“YOU REMEMBER, MR. SOUTAR, WHEN THERE WAS ALL THE TROUBLE ABOUT THE TATTIE-HOWKING?”

“Ah’m no deif,” grumbled Alec, neatly evading the question of his work on the potato harvest.

The clerk’s lips pinched.   She turned to the social worker again.

“Mr. Soutar has had the situation explained to him in terms suitable to his understanding – YOU KNOW, DON’T YOU, MR. SOUTAR, THAT IF YOU EARN ANYTHING, YOU HAVE TO TELL US RIGHT AWAY?”

“Aye,” said Alec.

“So no further allowance can be made for his mental handicap.”

Dave and I were puzzled as to when this alleged working could have happened, since  Alec had been attending the Centre every day, but the clerk said that Alec had been observed by DSS staff several times in town, working in the evenings.

Alec was indignant.  “Ah’m no’ workin’!  Ah wis jist helpin’ ma pal cry the papers.”

In the late afternoon of each day, casual newspaper-sellers collected bundles of the local evening paper from the printworks and hawked them across town from makeshift pitches in doorways.  To attract customers, the vendors called the headlines out in a characteristic, but generally incomprehensible, ululation.  This peculiar noise was (I presume) the origin of the term ‘crying the papers’.  Alec had been taking part of his friend’s bundle, so that the man had, in effect, had two pitches, meaning that his papers sold out quicker.

“So you were receiving money!” said the DSS clerk.

“An’ Ah gie’d it a’ tae ma pal,” retorted Alec.

“Your pal didn’t let you keep any of the money?” said the DSS clerk.

“Ah didna want it,” said Alec.

The social worker and the DSS clerk had a bit of a sharp argument at this point as to whether Alec’s pal could be deemed to be employing him, and whether helping someone out unpaid constituted ‘working’, with the social worker telling the DSS clerk, in so many words, not to be such a nitpicking fool.

“So you receive no money afterwards?” persisted the clerk.  “You are not rewarded for your time or labour?”  Alec looked blankly at her.  “Tell me again what happens,” said the clerk.

“Ah cry the papers.  Ah gie ma pal the money.  We go tae the pub an’ he staun’s me a pint.”

“Payment in kind!” said the clerk, triumphantly.  “We take this sort of thing very seriously!  Claiming Income Support whilst working constitutes fraud, which renders you liable to loss of benefits and fines of… “

“Hang OAN a minute!” said the social worker.  The arguments broke out again, louder.  At last, the DSS clerk agreed to seek authority not to pursue the matter, provided Alec stopped helping his pal with the papers.

The social worker took us back to the Centre.  “I’ll need to come in to reinforce this with Alec.”

With the manageress, we went into the office, where the social worker tried to impress on Alec that he could not work for payment in cash or kind.  Alec, who had been frightened and subdued in the DSS offices, was still frightened, but felt safe enough, in more familiar surroundings, to become loudly assertive.  “Ah’m NO workin’!  A pint’s no’ pey!”

“But you heard the Social Security lady say it is pay, didn’t you?” said the social worker.

As usual, contradiction wound Alec up.  “Yir a” talkin’ bollox!  Ye bunch o’…”   The obscenities spilled out at top volume.  To add to the confusion John came bursting in to find out what was upsetting his brother, contributing his own shouts of “Oi!  Oi!  Oi!” to the hubbub, until Dave persuaded him that he could best help Alec by staying quiet.

The social worker stood rather helplessly by the door.  “I’m sorry, Alec.  I ken you were just doing your friend a good turn.  But rules are rules….”

“Fuck AAFF!” bellowed Alec, by now not merely beside himself, but far past reasoning or even hearing.  He was crying, shouting, punching the wall and thumping the furniture, so that only fragments of sentences were audible.  “Bliddy weemen! … man’s work … wisna working … pocket money … on’y helpin’ … “

The social worker made to speak again, but the manageress shook her head at him.  We all stayed still and silent.  Slowly, the phrases ran down into hiccups and snorts.  At last Alec drew a long, shuddering breath, drew his sleeve across his face and looked round.

With his face smeared with tears and snot, he still had a dignity about him as he said, jerkily but with resignation, “Ah’m no’ tae help ma pal oot or the Social will stop ma Broo.”

“That’s about the size o’t, Alec,” confirmed the social worker.

“An’ Ah canna let ma frien’ staun’ me a pint.”

“Not without losing some of your money.”

“Ef Ah wis still a workin’ man, naeb’dy wid stop him staundin’ me a pint.”  Alec stared unseeing in front of him and his tears began to flow again.  He said, “Nae job.  Nae money.  An’ nae frien’s.”

The social worker said, “You can still be friends with your pal.”

Alec didn’t spare him a glance; his eyes stayed fixed on nothing.  “No, Ah canna.  Ye canna be pals wi’ someone ef’n ye canna help them oot an’ they cannae treat ye.  Helpin’ oot an’ treatin’ is whit pals dae.”

Dave moved to sit opposite, so his face was in Alec’s line of sight.  He said quietly, “You feel you’re being forced to give up your friendship.  You can’t afford to be friends with your pal any more because you will be docked money if you do the friendly thing and help him out.  Or if he does the friendly thing and buys you a drink.”

Alec focussed on him and nodded miserably.  “Aye.  An’ it’s no’ fair.”

“No’ fair,”  said John’s voice, unexpectedly.  “Basterts.”

Memory, stories and truth

Tags

#107days, learning disability, true stories

I’ve been mulling over the nature of memory and truth since I started writing the schoolroom centre stories.  Are they true stories?  Yes.  The truth, the whole truth, and nothing but the truth, so help me?  Ah.  Let me think?

Well, for starters, I’ve altered some identifying details, since some of the people I’m writing about are still alive.  Does altering names and other non-defining attributes make the people and what happened to them any less real?

Secondly, what constitutes a ‘true’ story?  One that is recounted as it would appear if recorded by a video-camera fixed to the narrator’s forehead?  Nobody tells stories like that – partly because the slow pace and irrelevant detail would be crushingly boring; partly because it would leave out some important components of the story, like the narrator’s bodily feelings and inner dialogue; and mostly because that’s simply not how memory works.

Back to Radio 4 again, on Friday night, the station broadcast a programme in a series called ‘In Search of Ourselves’ and the episode looked at memory.  One of the points made was that memory is context-dependent.  So my remembering Marion and the vests probably had a lot to do with the fact that Grenouille currently has a ringworm infection which is proving exasperatingly hard to shift – nearly five weeks after it first appeared, we are on the fourth different cream, and still it won’t go away.  That popped the dermatology lecture up in my mind, which linked, via a washing-line’s worth of undergarments, to Marion.  I would have remembered the vests story anyway as soon I moved to focus on Marion, because that put-down – and the ‘you daft besom’ look she gave me as she hit me with it – made me laugh out loud at the time, and still makes me smile now.  But I wouldn’t necessarily have set it in the context of my eclectic approach to university education, had I not been dealing with a drawerful of anti-fungal treatments.

Another idea in the programme was that memories are changed by our recollecting them.  According to the contributors, every time we take a memory out and look at it, we subtly reshape it to fit with our current circumstances and needs.  I’m not convinced about that one, although I am prepared to believe that the details we present about a memory depend on our current context.  My memory seems to work as a series of vivid pictures, into which I can step to replay the memory.  And yes, I may focus on different details of the memory at different times, but am I inventing those details to suit the circumstances?  I don’t think so and, absent recordings from the forehead-video-camera, who will have the data to prove me wrong?

On the other hand, these stories are over twenty years old.  I remember people’s manner of speech, and I remember individual phrases that were so striking – or repeated so often – that they remain stamped on my inner ear, but I can’t bring you dialogue as if transcribed from a recording.  I don’t believe anybody could, and I don’t suppose anybody expects it.  What I can do is make sure that the dialogue I present contains the key phrases that I recall, and that the rest of it is as true as I can make it to the overall feeling of the memory.

Here’s a third problem with ‘true’ stories.  It is said that ‘pictures are better on the radio’.  People can create images and sequences in their minds that the most inventive film director, with the biggest special-effects budget ever, could never hope to approach, let alone replicate.  If you could get ten people to listen to the same story, and then each project the ‘film’ in their minds onto a screen, you would see ten amazing movies and each would be markedly different from the others.  My Victorian schoolroom will look very different from your Victorian schoolroom; your Marion will sound and move differently from mine.  However accurate I try to be in telling a story, the tale each reader receives will be different.  An individual, personalised version.  The stories I think I am telling, are not the ones you are reading and visualising.  Does that alter their ‘truth’?

It is, however, objectively, factually true that, once upon a time, I smuggled myself into a dermatology lecture; and that I once knew a woman – maybe called Marion – who had learning disabilities, attended a day-centre where I worked, and wore a vest and a spencer.  Those bald facts don’t exactly make story, though, do they?  Stories need to be given a shape.  I don’t think that shaping a story automatically distorts the truth of the events within, but you may disagree.

So, are my stories true?  Yes, absolutely.  They are as true as true stories can be.

And now, if we’re agreed on that, and you are sitting comfortably….

Us and Ours

Tags

#107days, #justiceforLB, voices of disability

Today’s blogpost was going to be a belter of a schoolroom centre story that’s been a few days in the writing, but I’ve got sidetracked down a wee cul-de-sac off Memory Lane, so you’ll have to wait until next week for the big reveal.  Sorry.

Grenouille had a hospital appointment today, and as it was scheduled for mid-morning, for once I didn’t have to haul my sorry carcass out of bed at O’Jeeze o’clock in order to get through the morning routines before departure time.  That meant that at 07.50, instead of being in the pressurised pre-taxi whirlwind of pack-ups/teeth/will-you-PLEASE-put-your-feet-in-your-shoes, pretty-please-with-big-brass-knobs-and-twinkly-sprinkles-on (Grenouille thinks hyperbole is hilarious, and moves much faster when in a good mood, so in our house we cultivate comedy, even if it’s usually delivered through gritted teeth)  instead, as I say, shortly before eight I was still in the kitchen, peacefully finishing a cup of tea and listening to the radio.  Which was when the blast from the past blew me sideways into Timekeeping Close, because I had long forgotten that ten to eight on Radio 4 is the ‘Thought for the Day’ slot.

When I worked at the schoolroom centre, and indeed for years before and afterwards, Radio 4 was the measure and marker of my days.  Monday evening blast of ‘Barwick Green’?  End of ‘The Archers’; time to grab my score and run downstairs to wait for my friend Alastair to pick me up for 19.30 orchestra rehearsal.  Pink Floyd cash registers?  ‘Moneybox’, time to get Saturday’s lunch.  Every weekday morning, ‘Thought for the Day’ was my cue to turn the radio off, head to the bathroom and brush my teeth, so that I could set out for work at 8 a.m. sharp.

But today we didn’t have to leave until 9.30, so I had time to think about the radio.  About how Radio bloody 1 was always on in the centre workshop, and how sick you can get of even the best tunes when they crop up on a two-to-three hour rotation, day in, day out, for weeks.  About the many things that haven’t changed on Radio 4 in over two decades, and the ones that have.  Besides ‘Thought for the Day’, ‘Moneybox’ and ‘The Archers’, there are still many programmes that a fast-forwarding time-traveller from 20-something years ago would recognise: ‘Today’.  ‘P.M.’  ‘Woman’s Hour’.  ‘The World At One’.  ‘The News Quiz’, ‘Just a Minute’, ‘I’m Sorry, I Haven’t a Clue’, ‘Book at Bedtime’.

And the big one that’s gone missing?  ‘Does He Take Sugar?’, the specialist disability-issues programme.

According to Wikipedia, it ran from 1977-1998, which probably explains why I didn’t notice its passing, since by 1998 regular routines and radio listening had been swept clean out of my life by the unpredictable demands of looking after an infant Eldest.  But BC (Before Children), I listened to ‘Does He Take Sugar?’ and its sister programme ‘In Touch’ (‘for people with a visual impairment’) most weeks.  To my ears, they were both cracking programmes that let people with disabilities tell the rest of us like it is, brought new perspectives and ideas to listeners disabled and not, kept a weather eye on developments and the political climate around disability, and generally provided nexuses for disparate groups with disability interests.

Apparently, ‘Does He Take Sugar’ disappeared at the same time as the Radio 4 schedules were rearranged, with – amongst other things – ‘The World At One’ expanding to an hour and ‘Woman’s Hour’ moving from 2 p.m. to 10 a.m.  ‘Does He Take Sugar’ was subsumed into an expanded ‘You And Yours’ (‘Radio 4’s consumer affairs programme’).

I can see how disability issues like access could fit well with mainstream consumer issues, and that experience in championing consumer rights might well help with championing disability rights.  And I can understand the arguments for including disability issues as part of the mainstream instead of ghettoising them.  Certainly, Winifred Robinson did a sterling job of presenting LB’s story on ‘You and Yours’, but I can’t help wondering, a little uneasily, if the story might have been more closely followed up on a specialist disability programme, simply because there would have been fewer competing issues running through the programme office.

I think I just miss the in-depth exploration of disability that ‘Does He Take Sugar?’ provided.  And I entirely fail to understand the logic of axing ‘Does He Take Sugar?’ whilst ‘In Touch’ – a programme catering for a subset of people with disabilities – is still a standalone entity.  Of course, people with a visual impairment rely particularly heavily on aural information, and so it’s arguably helpful for them to have a known, discrete slot to tune in to.  But a preference, or need, for aural information is presumably true of people with many other disabilities.  If you have a disability like, say, fibromyalgia, how onerous are you going to find it to have your disability-specific news diluted across five hours of ‘You and Yours’ per week, compared with a concentrated thirty minutes of ‘Does He Take Sugar?’

Could Peter White maybe provide some answers, please?  I don’t mind whether that’s on ‘In Touch’ or ‘You and Yours’.

***********************************************************

P.S.
While I was checking up a fact or two after writing this, I came across this PhD thesis on ‘Mainstreaming Disability on Radio 4’.  It looks at the treatment of disability issues on ‘Does He Take Sugar’ and ‘You and Yours’, was submitted in 2003, looks at the theoretical constructs and actual practicalities around mainstreaming, and appears – on a skim-read – basically to conclude, ‘This could potentially be a good move or a bad one; the jury’s still out’.

As such, I’d say it’s pretty much as relevant now as it was ten-plus years ago.  Read it for yourself and let me know what you think?

Investing in education.

Tags

#107days, adult LD services, appropriate vocabulary, schoolroom centre stories, true stories, voices of disability

Whoever said that school was the best time of your life had, clearly, not been given the chance to go to university in the days just before student loans, when tuition fees were paid in full by local authorities, and maintenance grants had, by law, to be available to all.

The minimum requirements placed on students, especially arts students, were… well, pretty minimal.  As long as you turned up for tutorials, handed essays in by deadlines and passed your end-of-year exams respectably, you could more or less please yourself the rest of the time.  Since no registers were taken, you didn’t even have to attend lectures, although obviously, if you were fool enough to skip them all, your chances of satisfactorily completing the essays and exams reduced to near-nil.

Even 20 hours’ contact time a week leaves a person with plenty of leisure for other things, however, and there is only so much time most people can spend sitting idle in the Students’ Union bar.  Hence the flourishing clubs-and-societies culture at universities.  Besides pursuing collective hobbies, though, I followed a personal one, which was sitting in on other people’s lectures.  Since you didn’t have to sign in, you wouldn’t be noticed if you were canny; the trick was to find lectures that took place in the big theatres (where you could pass unremarked in the crowd) and to sit about two-thirds of the way back (so that the lecturer was unlikely to pick you for questioning).

I sneaked into School of Architecture lectures on structural steel and tensile strength coefficients, into presentations on the chivalric ideal in mediaeval literature, into an economics lecture on the relationship between macro-and micro-economics (utterly baffling, although I retain an impression that for economists, each aspect of said relationship can be demonstrated to perfection by a graph consisting of two axes with no scale, and three crossing lines in the middle).  My low-level maths skills also caused me problems with the sciences – Brian Cox was still at the stage of being Daring or D:Reamy rather than making astrophysics accessible to the masses – but I sat through quite a few enjoyably enlightening lectures in the School of Medicine.

This was made all the easier because the Arts Faculty had a termly institution known as Reading Week, when teaching was suspended and students were supposed to read around their subjects in preparation for writing extended essays or sitting exams.  Everyone knew it was really a half-term, and lots of students went away for the week, while I hung out with my med-student friends and sat in on their classes.

Some lectures were colourful – especially the slideshow for renal anatomy and the one on gastro-intestinal disorders.  Some were tense, like the lecture on abortion and ethics that turned into a highly personal debate between students who were veering towards favouring compulsory termination for diagnosed conditions and using some uncomfortably eugenicist language, and a student born with spina bifida who argued vehemently that you couldn’t predict development from diagnosis, that everyone ought to have the same chance at life, irrespective of disability, and that, “If you pillocks had your way, I wouldn’t be here at all.  Thanks a whole bunch!”.

Some were hilarious, like the paediatrics revision lecture one May reading week where the professor had written crib notes set to well-known tunes and I, along with everyone else in the lecture theatre, sang maxima voce through the symptoms of neonatal jaundice to the chorus of ‘Waltzing Matilda’:  “Low haemoglobin, high bilirubin…”  And there was the dermatology lecture, with the most startling slide showing a woman’s torso covered in Tinea lesions – the fungal infection variously called athlete’s foot, jock itch, dhobi itch, or ringworm, depending whereabouts on the body it shows up.

“This was an interesting one,” observed the lecturer with a sort of dispassionate enthusiasm, waving his pointer at the blotchy-red abdomen.  “The main problem here was not so much the infection itself, but more how to persuade the young lady that she didn’t need to wear multiple layers of synthetic undergarments, which were causing her to sweat and creating the conditions for the infection to recur….  What was she wearing?  Well, to my recollection, under polyester skirt and blouse, she had on a full-length nylon slip, a vest, a bra, nylon knickers over her tights to keep them up as well as nylon knickers under her tights for hygiene, and as a base for everything else she had a Lycra girdle that went from her bra-band to her hips.  Undressing must have been like peeling an onion full of static electricity.”  He permitted himself a small smile as he turned to contemplate the results of this mode of dress.

I remembered the dermo lecturer one day at the schoolroom centre, when I was helping Marion in the changing-room of a womenswear shop.  Marion was always impeccably turned out, thanks to care of the sister she lived with, and she liked browsing for new clothes.  She had removed her coat, her jacket and her twinset, preparatory to trying on a top.  Underneath was a long-sleeved thermal vest, and beneath that could be seen the outlines of a sleeveless doubleknit vest and a stout, longline, cross-your-heart bra.

“Goodness, Marion, are you not hot?” I said.

“Ma sister says it’s best tae be well wrapped up,” said Marion, with finality.

“Well, yes, you don’t want to catch cold, but you’re wearing two vests!”

Marion looked at me scornfully and pulled up the outer vest.  “‘Aat‘s ma vest!” she said, pointing at the inner garment.  “An’ aat,” – pulling down the top vest and tucking it firmly between her tummy-control pants and the waistband of her Crimplene slacks – “‘Aat’s ma spencer!“

Albert, ambulating

Tags

#107days, adult LD services, schoolroom centre stories, true stories

Albert was one of the ‘trainees’ from the residential home.  It was referred to as ‘the hostel’, although for security, residents were taught to give their address as ‘100 Brechin Avenue’, not ‘Brechin Hostel’.

Most of the hostel residents took a bus that headed first into town and than back out again on another diagonal to the Centre, but Albert preferred Shanks’ pony.  He didn’t follow the bus route, but took a direct line along the third side of the triangle, and although it was still a good half-hour’s walk, he never missed, rain, shine, or snow.  We worried when it was snow.

“Why don’t you get the bus, Albert?”

“L-like walking.”

He certainly did.  Albert also went for a mid-morning and a mid-afternoon ‘daunder’, always round the same pattern of streets, and then he walked home in the evenings.  I often bumped into Albert stotting round town at the weekend as well, small and skinny, and walking rather like Charlie Chaplin, if you can imagine Charlie Chaplin in a flat cap, a knee-length straight coat, and drainpipe trousers.

“H-hi!”

Albert was a man of many steps, but few words.  When he did talk, though, his speech was full of cherishable phrases.

“You off on your walk, then, Albert?”

“W-workin’ on m-ma phys-eek.”

“Physique, is it? C’mon, let’s see who’s got the best legs.”

“Hah!  M-ma b-budgie’s got better l-legs than th-that.”

“Cheek!  What about so-and-so, then?  There’s a fine shapely pair o’ legs for you.”

“They l-legs’d b-break the hairt o’ a ch-cheeny d-dug. “

Or he would break into song:
“La donna è mobile
Yir legs are wobble-éy
Nae blimmin’ wonder
Look whit they’re under…”

Like many people with a stammer, Albert did not falter when he was singing.

If all else failed, and he felt that he was being held up for too long, Albert would fall back on his ultimate conversation-stopper, his verbal Kryptonite.

“Ach, a-awa’ an’ r-raffle yersel’!”

Then, having delivered his put-down with a triumphant grin, he would button his coat, tie his muffler round his neck, settle his cap on his head, and stot off again.

Agnes and the infantry

Tags

babies, care in the community, institutions, intellectual disabilities, mothers, schoolroom centre stories, true stories

Not long after starting at the village school, I came across a new insult:  botley.  Judging from the contexts in which it was used, it was evidently the supreme slur; but I found it incomprehensible.  “What IS a botley?” I would ask, only to meet the jeering response, “If you don’t know that, then you’re a botley yourself, nyah, nyah.”

It was some time before I found out – from my Dad, who had known the area in his childhood – that this epithet referred to what was then Botley’s Park Hospital, but which had been founded in the 1930’s as Botley’s Park Colony for Mental Defectives.  It appeared that local children had understood “Botley’s Park” as “Botleys’ Park” and concluded that an inmate was therefore ‘a Botley’.

Dad also explained something that had long puzzled me: that when a bystander in the London street scene in The Magician’s Nephew refers to the Empress Jadis as “the h’Empress of Colney ‘Atch”, he intends it to be inferred that she is deluded; Colney Hatch in North London was the home of the largest lunatic asylum in Europe, drawing inmates from the whole London area.

At the schoolroom centre, the phrase for admission to the local psychiatric hospital – still referred to as ‘the Asylum’ – was ‘being sent up the road tae Rigg’.  ‘Admission to’ was still an euphemism for ‘incarceration in’ – the place was isolated from the city, set far back from the road, screened by walls and dense planting.  It was one of those Victorian affairs of solid stone, with cone-topped turrets and crowstepped gables and if you wanted one word to sum it up it would be, ‘bleak’.  The word ‘Rigg’ connoted imbecility, madness, and a lingering whiff of sexual revulsion, since many of the Victorian inmates had had the underlying condition of tertiary syphilis.

Thankfully, people with mild or moderate cognitive impairments were no longer sent long-term to places like Rigg.  Instead, they were set up in Council flats as small, mutually-supporting groups.  For Agnes and June, it seemed to be working well.

Agnes was one of the older ‘trainees’ at the schoolroom centre.  She was tiny, trim and energetic, with thick, fractured-ice-white hair that I think must once have been an intense red, and summer-sea-blue eyes. She shared a flat with June, the youngest ‘trainee’, who had moderate physical disabilities resulting from birth injuries that had caused cerebral palsy.  June took care of admin, shopping lists, budgets, forms and writing; Agnes cleaned, cooked, fetched and carried.  They did their weekly shopping trip together, June counting the money and Agnes carrying the bags.  They had complementary personalities, too. June was somewhat highly strung and prone to fits of exasperation; Agnes was mostly serene and accepting.  But on the very rare occasions when Agnes was in a tizz about something, June could be touchingly understanding and protective of her.

Going on the shopping trips with them was one of the perks of the job as far as I was concerned.  They would bicker amiably beforehand about their menu (“Stovies again!  I’m scunnered wi’ you an’ yir stovies!  Can we no’ have somethin’ else this week?”  “Ah like stovies.”  “Och, you’d eat them till you turned into stovies!  Weell, just so’s I can have chops one day…”)  and have friendly arguments in the aisles about branded versus non-branded goods, but they also noticed what was happening around them and would treat you to a highly entertaining running commentary of their observations and opinions.  They were well-known in the area, and the shopping spree was likely to be enjoyably prolonged by bumping into a neighbour who had time and inclination for a good blether.

For Agnes, the highlight of any trip was meeting somebody with a baby.  Agnes loved babies, and would peer under the hood of every pram we met, make enquiries of the pusher as to their relationship to the infant, go into details of its name, age, weight, temperament and development.  She would coo over the length of the baby’s eyelashes, the cuteness of its wee button nose, comment admiringly on its bonnie hair or rosy cheeks.  Agnes could always find something to admire in a baby, no matter how bald, bawling, spotty or snotty. For her, there was no such person as ‘a baby with a face only its mother could love’.  Finally, she would take a silver coin from her purse and make to lay it in the pram, then turn and present it to the adult, saying, “Better gie this tae ye,” and then to the baby, “We dinna want emb’dy eating something they shouldna, dae we?”  This ceremony of the piece of silver – “for luck” – was Agnes’s way of bringing the encounter to a graceful close, and we would walk on, while she said happily, “That wis a bonnie bairn, wis it no’?”

“Yes, Agnes, very bonnie.”

No-one seemed to mind being accosted by Agnes.  Diminutive in her smart, neatly-belted, going-for-the-messages coat, a headscarf tied under her chin to keep the white hair in place, and with her gentle, innocent manner, she had something of an air of everybody’s favourite grannie about her, with a slight suggestion of fairy godmother when it came to the presentation of the coin.

The powers-that-were decreed that Agnes and June should move into a larger flat, in order to accommodate a third ‘trainee’, who was being decanted from the residential home.  Now that the ‘Asylums’ were emptied of inmates, the Care in the Community policy had moved on to shutting down these smaller places.  The ‘hostel’ was a bright, warm, cheerful place that rather resembled University Halls of Residence and it was already about half-empty.  Their social workers took Agnes and June to visit the new flat.  On her return, June was volubly unimpressed.  The place had apparently been inhabited by a group of men, who must, said June, have been the clartiest beasts in creation and have reeked like lums into the bargain, since everything stank to high heaven of cigarette smoke.  Social Services, applied to, declared that they were prepared to supply paint for redecorating, but stipulated that the women would have to do the painting, and any cleaning, themselves.

Agnes came into the centre on the following Monday morning in a state of near-collapse.  She had apparently spent all weekend trying vainly to scrub the new flat into an acceptable state and was almost incoherent with mourning over the impending loss of her present ‘hoose’ and her fears about being harried into the other one.  The centre manageress went to see the flat, and came back nearly as incoherent as Agnes – reporting that it was filthy, the carpets sucked stickily at the soles of your shoes, and the fag-smoke was impregnated into everything, including the wallpaper.  There was no way that Agnes, as the only fully able-bodied prospective tenant, could sort it out for the other two.  And Agnes had already been put at risk – in an attempt to remove the nicotine glaze from electrical fittings like light switches, she had been washing them with soap and water.

“It’s God’s own mercy she hadn’t blown every fuse in the block and electrocuted herself forbye,” said the manageress, heading for the phone and a rant at social services, while I sat trying to comfort Agnes and June.

Agnes suddenly spat, “Ah’m no’ going there again till it’s sortit.  Ah’d rather be sent up the road tae Rigg.”  June protested, but Agnes just kept repeating, “Ah’d rather be sent up the road tae Rigg.”

Eventually, Agnes took herself and her indignation off to the lavatory, whereupon June burst into tears.  “She’s aye said that Rigg is the worst place in the world and she’ll niver go back.  How bad must she be feeling, tae say the likes o’ that?”

It was a horrible day, and after the manageress had threatened and cajoled social services into agreeing to have the flat professionally redecorated throughout, and after we had given the news to Agnes and June, and calmed everybody down as best we could, and after the ‘trainees’ had left for the day, we staff all sat around for half an hour, drinking strong tea and venting our own feelings.

“I didn’t know Agnes had been in Rigg,” I said.

One of the other care workers pursed her lips.  “Agnes has on’y been livin’ in toon fur ten years or thereaboots.  Ma mither’s freen’ used tae work up tae Rigg.  Agnes wis in there maist o’ her life.  Naeb’dy kent wha did it, but someb’dy got her pregnant when she wis fifteen, an’ she wis pit awa’ fur bein’ whit they ca”ed a moral imbecile.  It wis awfy sad.  They took the bairn awa’ fae her, o’ coorse, but he wisnae the fu’ shillin’ himsel’, an’ when he wis tae auld fur the bairns’ hame, he endit up in Rigg an’ a’.  Ma mither’s freen’ said it wis the saddest thing iver, tae see the twa o’ them sittin’ at the same table, an’ them no’ kennin’ that they were mither an’ son.”

I thought of how much Agnes loved babies, and I thought of her kindness and the innocence of her forget-me-not eyes.  I thought of the love that she would surely have given to her boy, had she been allowed to bring him up herself.  I thought of how much better he might have done for being brought up by someone who loved him, even someone who wasn’t ‘the full shilling’, instead of being processed through an institution.  I thought of the light-switches and the soapy water, but I still thought that with a bit of support, Agnes would have made a fine mother.  And I thought of the systems that punish the vulnerable for their vulnerability, and I felt sick.

High Ordeals: Oppressive practice and Twittertrolls.

Tags

#107 days, #justiceforLB, ogres, Sloven Health, trolls, Twitter

One of the great things about the Justice for LB campaign is that it is collective.  As the parent of a child with additional needs, one often feels isolated – because one IS.  If your dude isn’t able to go to certain places because of their differences – whether that’s because the places are physically inaccessible to them, or because their idiosyncrasies are palpably unwelcome – then you don’t go there, either.  If, whenever you are out, your attention is at all times somewhere between 80% and 100% focussed on your dude’s needs – because it has to be – then your own chances for interactions are necessarily limited.  And if your caring responsibilities are so onerous that when you get respite, all you can sensibly do with it is sleep, then respite is not a de-isolating provision.

The most scarily isolating thing of all, though, is the recognition of yourself as one small individual having to deal with large, mostly faceless, organisations.  Even if you are articulate, experienced, educated, it is a difficult place to be, because you are so alone and the power imbalance is so great.  A big, wealthy organisation can easily oppress an individual without even trying, unless it makes conscious and conscientious efforts not to.

I recently had to threaten Grenouille’s local authority with Judicial Review.  I have spent enough time ferretting around in law libraries and analogous corners of the interweb, to know when I have somebody bang to rights about what they are up to, and in this case, I most definitely did have.  So I could write to the Director of the relevant service and say, ‘Here is what has happened.  Here is what should have happened.  Here are the legislation and case-law that back my assertion that you have failed in a statutory duty.  This is the deadline I am giving you to right the matter, or I shall place it before the High Court’.

I knew the authority was unlikely to want to go to Judicial Review, since it would be on a losing wicket before it even hit the pitch.  However, if it did turn bolshie, I would be in for a minimum of five grand in fees.  That would be all my personal savings gone, whereas it would hardly make a perceptible dent in a big organisation’s budget.  So until I got the abjectly-grovelling apology from the Director, about a week later, I was stressed to hell: pulse racing, breath catching, head pounding, stomach churning, every time I thought about it.  Which was, of course, every other minute.  Good job I wasn’t due my carer’s health check that week, or I might just have bust the blood-pressure reader.

People like me don’t go in for organisation-baiting as a form of fun recreation.  We do it out of miserable necessity; not for amusement, but because we have to do it or our dudes get done down.

This is where Dr. Sara Ryan, Connor Sparrowhawk’s mother, started from: a lone voice howling from an impenetrable wilderness of grief and outrage, because her dude had been definitively done down.  Those who had been following her boy’s life knew they couldn’t get anywhere close to feeling with her, but they wanted to help, and as far as they could, they surrounded the family.  People who had known LB in life turned up by the busload for his funeral.  Dozens of parents and carers posted on Sara’s blog.  Offers of help poured in.  The Assistant Editor of the local paper commented the day after Connor died: “There are obvious issues here so if you like to speak to us at the Oxford Mail about these, please contact me on …” 

Meanwhile, the organisation Dr. Ryan was facing – Southern Health and Social Care Trust – seemed to epitomise all the undesirable aspects of a large organisation: it steamrollered, ignored, obfuscated.  It failed to check the well-being of other residents in the Unit where Connor drowned; it failed to check that the Unit was a safe place for those remaining residents (it absolutely wasn’t).  Connor’s family tried playing strictly by the rules, keeping quiet about details of the bewildering processes they were having to negotiate.  

Four months on, the dam burst when the Trust tried to manipulate the rules of the internal investigation to exclude Connor’s family’s advocate.  The people around Connor’s family, the undefined, voluntary ‘Team LB’ went spontaneously to work and within a couple of days, the advocate was reinstated.  Dr. Ryan even praised the Trust for reconsidering.  But thereafter, what emerged from and about the Trust was relentless shiteness – dung-pats of awfulness fuelling the concern generated by LB’s death.  Eventually, the concerns coalesced into the Justice for LB and 107 days campaigns.

Over the same period, it trickled out that the Trust had pulled the same procedural trick regarding internal investigations and advocates on another family whose child had died; that concerns about the unit where Connor died had been dragging on since 2011; that the documents it was putting into the public domain gave a Trust-favourable spin on reported events; that it was leaning on people, apparently in expectation of silencing critical voices; that it maintained that continuing criticism was unjustified because it was planning to improve things (sometime).

The trouble about denying that you’ve been caught with your drawers down, though, is that when you try to make a move with them still round your ankles, you trip yourself up and destroy your ability to arse-cover.  Sloven Health fell flat on its collective face into a midden when the CQC report into Slade House was published in November 2013, and floundered in even deeper trying to block publication of the Veritas independent report in early 2014.  Having squandered any goodwill that Connor’s family might have been able to extend to it, it carried on casting itself as the victim, as has been made apparent from documents that have recently emerged from FOI (Freedom of Information) requisitions.

“Sadly, since the publication of the independent report the Trust has been subject to trolling on Twitter, a number of staff have been directly targeted and have felt intimidated by the Twitter traffic, we are aware of at least one staff member’s account having been hacked and a bogus Trust Twitter account set up.  …..  We should be clear that there is absolutely no evidence that Sara Ryan is personally responsible for this trolling, hacking or intimidation but there are clearly some people who wish to use this case inappropriately.”

That use of Dr. Ryan’s name in that last paragraph is a textbook example of what I have heard referred to as the “When did you stop beating your wife?” manoeuvre.  No evidence is adduced that trolling, hacking, or intimidation have even taken place, but Dr. Ryan’s name is irrevocably – and completely unjustifiably – linked with all these nefarious activities.  And then Trust personnel seem surprised that Dr. Ryan doesn’t trust them as far as she could throw Slade House, and doesn’t want to ‘engage’ with them.

Other NHS organisations take a different approach to engagement.  I don’t know if this blogger’s Trust has a stated position on anti-oppressive practice, but its Twitter policy as outlined in the post suggests that even if it does not, it is operating in accordance with at least some of the principles of anti-oppressive practice.

The behaviour of some other organisations leads one to suspect that not only have they failed to incorporate anti-oppressive principles into their practice, but that if anti-oppressive practice has ever come up on their radar, they’ve gone, “Sod that for a game of soldiers, we’ll do the diametrically opposed thing.”

It’s not just Dr. Ryan. Look at the Neary family’s battle with their local authority and neighbourhood ATU. Go into any gathering of parents of children with Statements or EHCPs, and hear woeful tales of the foot-dragging, smoke-screening and downright lies, ahem, inaccuracies to which they have been treated.  Listen to tales from patients who, having been admitted for specific acute conditions, have had their chronic co-morbidities ignored or mismanaged so that they come out of hospital with their general health in a significantly worse state than it was when they went in.

The only admissible response from Sloven to Connor Sparrowhawk’s family would have been along the lines of,

“We have messed up, big-time.  We are not quite sure how we did it, but we acknowledge that we must have got things wrong at every level for such an appalling end-point to have been reached.  We realise that no apology can be sufficient, but nevertheless we are sorry.  We will find out what happened, we will take action to prevent it happening again, and we will make our findings and our actions public.
This is how we will go about finding out…..  This is what we will do in the meantime to keep the other people in the same unit and similar units safe….  We will keep you informed as we go along of what we are doing, by…..  If you would prefer us to communicate differently, please tell us and we will do as you ask.  Is there anything you think we should be doing differently, or anything else we haven’t mentioned that you think we should be doing right now?”

How different Sloven’s area of the Twittersphere would have looked, had they responded and acted along those lines.  It’s worth considering that if STATT, Sloven, the commissioners and Oxfordshire Social Services had been practising anti-oppressively, Connor might never have died:

“From the point of view of service users, practitioners are often in positions of considerable power, particularly where decisions are being made about the delivery of services and around intervention in people’s lives. To practise empowerment, workers will need to focus on working with service users to engage them in the problem-solving process.

“Empowerment is linked with anti-oppressive practice, in that the worker can work with service users to enable them to overcome barriers to solving problems – whether located in the attitudes and practices of professionals and social institutions (for example, health and education authorities) or in the beliefs of the service user. The worker’s knowledge of service provision and the law can be critical in empowering service users.

“Anti-oppressive practice is ‘about a process of change which leads (service users) from feeling powerless to powerful’ (Dalrymple and Burke, 1995).”

Instead, Connor was warehoused, disempowered, manipulated and ignored, and his family (who, as Connor’s carers, were also service users entitled to support) have been marginalised, discounted, excluded and lied to.

I’m proud to be one of the people trying to bring a few truths home to Sloven Health and the other responsible organisations, in particular Oxfordshire Clinical Commissioning Group and the Safeguarding Board.  I stand by my deconstructions of their various pronouncements and actions.  They are welcome to try to justify their speech and acts, although in a spirit of kindness, I will first refer them to my paragraph about descending drawers above.

So, who’s the troll? I spy ogres….