Rules and Guidelines

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Can’t help feeling slightly sorry for the Eddie Stobart PR/comms people (whether it’s the lovely Bonnie or someone else) when they come into work this morning and see what’s been happening on the company Twitter timeline over the weekend.  Here’s hoping they feel love-bombed rather than battered.  And a mea culpa from me, as I’m about to add to the heap of waiting messages.  You see, I wish to resile from my suggestion of Elle Bea as an alternative to Connor Sparrowhawk.  Since I posted A Cab For Connor on Friday, it’s become evident that the ‘Stobart lorries carry female names only, no surnames, no nicknames’ rule is not actually a rule, it’s a guideline that’s been bent or bust on several previous occasions.

The first time of which I’m (now) aware was in 2005, when a cab was named Optimus Prime, to celebrate 20 years of the Transformers. While dear old Optimus comes from a C/Fe culture that seems heavy on the Fe and light on the C, and is therefore probably not gendered, it’s equally obvious that they (a plural pronoun seems appropriate for a multiform entity) have been assigned male by Hasbro and the film companies, and accepted as such by the Stobart company.

At some point thereafter, a truck was named Valentino.  This was apparently after ‘Italian racing legend Valentino Rossi’, a motorbike racer who has had the distinction of winning world titles in four different classes (rather than the fashion designer or the silent film star), but I can’t find any further rationale for this decision.

The third truck, on the other hand, Lee James Rigby (2015) breaks both the ‘no males’ and the ‘no surnames’ guidelines, for the best of reasons.  The fusilier, who was murdered in 2013 while LB was still in the STATT unit, had hoped to become a Stobart driver once his service days were over, alongside his father, also a driver for the firm.  It’s a great credit to the firm that they would honour Lee and support his family, by making an exception to their naming guidlines in his memory.

So I hope the decision-makers at Eddie Stobart will now pronounce themselves in favour of Connor Sparrowhawk, as

  1. There’s precedent for the use of male names, and of a surname.
  2. Connor loved Eddie Stobart lorries and felt a deep connection to the firm, which has been passed on to the people who have come to know him since his death.
  3. Connor, like Lee, died a needless and unjust death, and deserves to be remembered.
  4. It would be a wonderful thing to do for his family, who have suffered continuing injustices following his senseless – because preventable – death.
  5. Connor Sparrowhawk is just such a fabulously cool name.

Looking forward to hearing from you, @EddieStobartCom. Hope you’re all having a good Monday and that you feel a well-deserved glow of pride in doing Connor proud.

All the best

Kara.

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A Cab for Connor.

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An online discussion yesterday and today, sparked by a tweet from the Eddie Stobart  haulage company about naming its lorries, has hurled some nearly-six-year-old memories into the front of my consciousness.  When LB died, his given name was known only to a few people.  For all of us out in virtual space who knew him through his mother’s mydaftlife blog, he was Laughing Boy, LB. Somewhere on there I had seen a mention that LB’s actual surname was that of a rare bird, so when a week later the obits column in the Oxford Mail mentioned “SPARROWHAWK Connor: Died unexpectedly on 4th July aged 18” I was pretty sure that was LB; and the following day, an article in the paper confirmed it with a piece on the opening of his inquest: “Mr. Sparrowhawk was found unconscious in a bath”.

Back then, apart from those two Oxford Mail pieces, Google only returned a couple of hits for ‘Connor Sparrowhawk’.  One was this lovely clip of LB, recognisable from the glimpses in the blog photos, wearing funky psychedelic wellies and a workmanlike cap, driving a ride-on lawnmower.

The other was a comment from Connor himself (now, sadly, archived and no longer accessible online) on the Carlisle News and Star‘s online obituary of Eddie Stobart Jnr.

By the time the #JusticeforLB 107 days campaign got going in 2014, many people knew how devoted Connor was to Eddie Stobart. Connor’s love of lorries has been a recurring theme ever since.  We still collect Eddie truck names on motorway trips, and since the news came out last year that the Eddie Stobart marque might be at risk of disappearing from our roads, owing to a trademarking  dispute, I’ve been tweeting our gleanings  with the hashtag #GatherYeEddiesWhileYeMay.  We’re  far from being the only ones for whom Eddie Stobart lorries mean ‘Connor’. There are hundreds, maybe even thousands, of people whose first thought, on seeing the iconic green and red livery, is of LB.

So when @EddieStobartCom posted this tweet yesterday, there were a good many replies suggesting ‘Connor Sparrowhawk’ and ‘Laughing Boy’.


Unfortunately, as yesterday’s tweet suggests and the Stobart Club website confirms, Stobart lorries only carry girls’ forenames; preferably a pair of them, to ensure a maximum of unique name combinations. Neither boys’ names, nor surnames, nor nicknames are accepted. During the 2014 #JusticeforLB campaign, one of Connor’s aunts tried to get a Stobart lorry named after Connor, but because of the rules, the nearest she could get was putting his sister’s name forward instead. 

Rodgers Coaches and Earthline Ltd stepped up and named three buses and a heavy haulage truck respectively for LB, and I’m still looking out (fruitlessly so far) for an Eddie named Rosie Bluebell, but I wonder, five years and a huge amount of Connor-related publicity later, whether the Eddie Stobart Company would consider breaking its rules, just once, and using a male name or a nickname to dub a tractor unit either Connor Sparrowhawk or Laughing Boy

It would be a fitting tribute to the firm’s No. 1 fan, not least because he always, repeatedly, questioned the reasoning behind rules, to the point where his siblings were driven to capitulation (“I don’t know why, Connor!”) and his aunt begged him to ‘turn off his Y-box’.

But if rules are rules and a pair of girls’ forenames are the only acceptable format, maybe, half a decade after they were originally approached about Connor, the Stobart company could fast-track Elle Bea?

Think about it, eh?

 

 

Not So Well Spotted.

Shouted up to Grenouille’s room to deal with a (possibly dead) ladybird on the bedroom door carpet strip. Our attics are infested with hibernating harlequin ladybirds and whenever they get into the house, G has a major freak-out fest.

I am greeted at the top of the stairs by an out-thrust hand proffering a sheet of tissue.

“Mum, mum, I’ve got you a piece of loo-paper to pick it up.”

“Can’t you pick it up, G?”

“Ugh! No! Hate ladybirds! Creepy!”

(I peer)

“G, that’s an apple pip.”

Helpful. NOT.

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Ugh. Horrible evening yesterday. Grenouille arrived home and somewhat to my surprise I saw the driver as well as the escort hovering outside the door.
“Can we have a word with you?”
“Yes, of course, come in.”

It turned out that G had been in a right old state all the way back, after An Incident during a College trip. My heart sank.

The trip had been stressing G out all week. It involved planning a Christmas shopping expedition to a big multi-retailer centre: budgeting for tickets, purchases and lunch out, then taking public transport from College to the Big City, navigating the streets and the shopping centre, interactions with strangers and food that wasn’t from the usual pack-up. Not just for a couple of hours, in our little town, with a dedicated PA, but all day, somewhere large and unknown, with shared support. For G, it was a massive, massive ask.

G is not on the autistic spectrum. But lots of the things that autistic people find difficult – crowds, noise, bright lights and colours, movement, unfamiliarity and unpredictability – are also difficult, sometimes overwhelming, for G. And don’t talk to me about clothes with the wrong kind of seam/label/cut/collar/waistband/zip/buttons, unless you really want to listen to a half-hour disquisition on the difficulties of finding acceptable garments for G. Or the head-melt of trying to explain to a terminally honest teenager, who is constitutionally incapable of understanding hypocrisy and lies, why people sometimes say one thing and do another. Threading a way through the battering of public exposure, without blowing a gasket, takes huge amounts of G’s mental energy and is very tiring. Add in physical and mobility difficulties, and – well, I hope you can understand why I, as well as G, was apprehensive.

So the preceding night, G put a careful selection of essentials into a small backpack, one that would be lighter to carry than the school bag, and rehearsed all the things that would need to be done differently about medication and food. We spent about forty-five minutes discussing and painstakingly selecting an outfit for the following day that would combine a maximum of comfort with the sort of style that G felt was appropriate to display while in a group of peers. It then took a further 2 hours for G to wind down enough actually to go to bed.

It’s no good trying to hurry G up in stressful situations. If ever there was a proof of ‘more haste, less speed’, it’s G’s reaction to chivvying. And that was one of the pressures of the trip: public transport, which has big steps and no seatbelts, and which (unlike the car that can leave whenever G is ready), won’t wait if you’re late; and doesn’t turn up until it feels like it, even if you’ve been hanging around in highly-strung anticipation for ages. Instead of a bedtime story or singalong, we had to go through several iterations of what-if-I’m-late and what-if-the-train-is-late.

In the morning, G got up good and early, and hustled through breakfast (having chosen, the previous night, something that would be easy and quick to eat). Everything went as merrily as a marriage-bell. G even had time to take everything out of the backpack, and put it all back in again, to be triply sure that everything that should be there, was there, before the taxi arrived.

I watched G walk off up the path, five foot three and six stone eight pounds of heroic, if unsteady-on-the-legs, determination. In drainpipe jeans, walking boots and a short, unpadded jacket instead of the usual puffa (which would be more awkward to carry about inside the mall), G looked even tinier and more fragile than usual, and I felt a nervous clutch in my middle.

But it was fine. No phone calls, nothing, until the taxi rolled home again.

It turned out that catching the train had been a relative doddle, but the arrival went badly wrong for G. As staff – one inside the train and one outside – were encouraging G to descend, slowly and carefully, to the platform, a man waiting to board decided to intervene. The intervention consisted of seizing hold of G around the middle, apparently with the intention to bypass the lengthy climbing process and simply plonk G on the platform. College staff, horrified, immediately shouted, “No!” and stepped in to stop him. G, after further, disorientated hesitation and a bit of hyperventilating, eventually made it down safely, and was whisked off, shopswards, in the group.

G did not want to spoil things for the rest of the group by making a fuss at the time, but seemed to have had a severe delayed-shock reaction once in the safety of the familiar taxi. The taxi staff were concerned, having never seen G in such a state. I thanked them for letting me know, and they took their leave.

“G, do you want to talk about it?”

Over a cup of tea, and a restorative slice of lemon drizzle cake, punctuated with the odd shout, and dashing off to sit wedged in a cramped corner for a few minutes to help contain the bad feelings, the story emerged in bits and pieces.

“I was scared, I didn’t know what he was doing.”
“He didn’t say anything and he didn’t look at me.”
“He didn’t ask my permission, he just invaded my personal space.”
“I couldn’t see his face because his hood was up, when he put his hands on me it was scary.”
“I was shocked, I don’t like people touching me without my permission.”
“It felt like he was pushing me around, it reminded me of when I was bullied.”
“It didn’t feel right.”
“I didn’t have time to think about it then, because we had to get over the bridge to the other place. I kept it all in because I didn’t want to spoil it for the others.”
“When I got in the taxi, it all came back to me and I couldn’t help myself from upsetting.”
“I don’t want to go back to College, I’ll be remembering in my body how I felt.”
“I want to go back to College, I want to see my friends and I want to talk to my pastoral tutor.”
“I don’t want to talk to <tutor> about what happened, I want to talk about how to stop it happening again.”

Ouch. Finger right on the nub of it, G, and the most difficult problem to solve, because essentially, it relies on being able to assume that people you don’t know are reasonable, respectful and trustworthy human beings. And as you’ve just found out, that ain’t always a safe assumption. So,

Public service announcement for non-disabled people:

Do NOT lay hands,
unasked and without permission,
on a disabled person going about their business,
at their pace,
in a public place,
with a view to speeding them up.
You are NOT ‘helping’.
You are committing an ASSAULT.
Thank you.

On the ‘helping’ thing, several people since then have suggested that the other person was ‘just trying to help’. I’m not buying it, because G disagrees. G did not experience the contact as an altruistic attempt to assist, but as a coercive attempt to serve the other person’s wish for speed. I am not going to argue, and I will lambast anyone who does try to argue. There was disrespect enough in this attempt to deny G bodily autonomy, without compounding it by querying G’s right to emotional and perceptual autonomy. Besides, as G said last night,

“If he was trying to help, why didn’t he talk to me? Why didn’t he look me in the face? Why didn’t he treat me like a real person?”

Quite.

Nigel, Oily Rags and Engineers.

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I spent part of my paid working life in the Chief Executive’s department of a Local Authority and one of my duties was to arrange Council Committee meetings and organise agendas and reports for circulation to statutory deadlines. Official papers had to be circulated at a prescribed minimum interval in advance of the meeting, or it could not lawfully take place. Copies of the agenda and non-confidential reports had to be made available to the public, although for most meetings, the only person who wanted to see them was Nigel, the twenty-something junior reporter from the local paper who was tasked with reporting on Council matters.

I spent many an hour sitting in the same Council chamber as Nigel, he in the public seats, me in my Committee-clerk’s place next to the chairperson, listening to debates of varying coherence, but sometimes Nigel didn’t turn up. If he couldn’t make it on the day, he would phone me the following morning to ask if any of the resolutions had varied from the officers’ recommendations. Usually they had not, which meant he could file his report, written in advance of the meeting on the basis of the agenda papers. Any variations meant he just had to do a little tweaking and could still make his copy deadline.

The Members were always a bit miffed when Nigel failed to show up. They seemed to think it was cheating to report on a meeting he hadn’t attended. I, on the other hand, had a sneaking sympathy for him: why should he spend two or three hours of his life listening to people laboriously make the decisions that someone else had already written out for them? I did not mention to Members that I found using the Nigel method of writing – in my case draft minutes – in advance of the meeting, was an excellent way to earn a reputation for diligence and efficiency.

Then the Council found itself in a legal pickle and various senior officers and leading Members were required to attend the High Court for several days. The Members were very miffed to discover that Nigel had gone to the trouble of catching the same early train as themselves, in order to report live, as it were, from the proceedings.

My sympathy for Nigel blossomed into frank admiration. He seemed to me to be doing things just right, journalistically speaking: he knew his stuff; he did his research and double-checked it; he made no bones about doing anything and everything he had a right to do; and he had the savvy to realise that if you stand by your rights and ignore the ‘unwritten rules’, they will just have to be rewritten not to include you.

After Annual Council one year, I managed to corner Nigel over a pint and got him to expand on his journalistic principles.

“This stuff matters. It may be ‘only local news’, but there’s tens of thousands of people with a vital interest in it. Do your leg-work. Ask some questions to which you already know the answers so you can check for truthfulness. Always look as if you know what you are doing. Never ask permission – know what you can do and just go ahead. Cultivate your contacts at all levels, but don’t let yourself be fobbed off with oily rags (here he looked rather apologetic) if you need to speak to the engineer. You can’t refuse to dig over dirt, the gold is often buried. And if you think a piece might need to be shown to legal, then it definitely needs to be shown to legal.”

With all that in mind, and with a nod to Nigel, here is a letter to a local Authority that I was annoyed into writing last week on behalf of a distraught fellow-parent. The specific Council shall remain nameless; it could be anywhere in England.

To: Chief Legal Officer
NE Whare Authority
Council Chambers
Whareabouts.

Copy to: Manager, SEN Transport
Copy to: Lead Member, education & children’s services

Re: SEND Transport Services to <schoolname>
<Child’s name> <Child’s date of birth>

Dear <CLO’s name>

I have recently been having somewhat fruitless discussions with your colleague <SEN transport manager’s name> and I wonder if you may be more successful than I in explaining to him that the course of action he proposes to take is not within his legal powers as an officer of the Authority? I feel he and his department have failed to grasp the undesirable consequences for N. E. Whare of persisting in their current practice.

He contends that if my child is in receipt of mobility allowance or has a Motability car, I am expected to provide his/her transport to and from school. Apparently this is in pursuit of something called ‘least restrictive transport options’. I cannot find any reference to this entity in the relevant legislation, namely Section 508B of the Education Act 1996. As you will know even better than I, any guidance, statutory or otherwise, and any Authority policy, MUST be held subsidiary to and operated in accordance with the provisions of primary legislation.

The obligation under S.508B EA 1996 is that eligible children – of whom my child is one, by reason of disability – must be provided with free transport to school arranged by the Local Authority. Subsection 4 states that certain other arrangements may be made with parental consent. I refuse consent to any such arrangements and I require the Authority to fulfil its statutory duties forthwith.

While I am sure that <local Nigel’s name> would welcome a change of scene from the Council chamber to the High Court for a day, I’d be surprised if NE Whare Authority will relish being reported as one that has obliged the family of a disabled child to go through the trouble, stress and expense of bringing judicial review proceedings, in order to force the Authority to fulfil its statutory duty by providing transport in accordance with legal requirements, as it should have done in the first place.

I trust therefore that from now on, neither I nor any other parent in NE Whare’s area will find the Authority trying to land us with obligations whose imposition is ultra vires.

I look forward to receiving transport proposals for my child that are consonant with the relevant legislation.

Yours sincerely

<Parent’s name>

She’s Leaving Home.

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Last summer, my mother had some unexpected visitors. An unfamiliar car pulled into the drive and an unknown late-middle-aged woman knocked tentatively at the door.

“Hello, I’m so sorry to bother you, um, you see, this is the house I lived in as a child…”

“Oh, you must be one of the Batt children,” said my mother.

The visitor nearly fell off the doorstep in astonishment. “How did you know….?”

“We bought this place from your parents,” said Mum.

The lady looked even more knocked for six. “You remember them? The thing is.. we’re doing a tour of the places we lived, because it’s my mother’s ninetieth birthday. She’s in the car. Would you have time for a chat?”

“Of course!” said my mother, delighted. She invited them in, showed them all over the house and let them discover what was ‘new’ and what remained unchanged, served them a copious afternoon tea, regaled them with decades-old gossip about various village worthies of their mutual acquaintance, and waved them off with a new address in her bulging contacts book and a standing invitation to drop by in Dorset, should she ever find herself down that way.

That the Batts had managed to accommodate even more children than my parents ended up with, may have been one of the selling points of the house. At least we didn’t have to be stacked in bunk beds, four to a room. But this year, after almost half a century, my mother is selling up. A four-bed, three-recep., two-bath house, with a quarter-acre of garden and various ancillary buildings, is just too much for a lone woman in her early eighties. Especially a lone eighty-something woman with a dodgy hip.

Mum had a hip replacement just over four years ago. I (re)wrote Sloven-spun Shitespeak in the train on my way to visit her while she was convalescing from the operation. I found her on her usual irrepressible form and despite her crutches, she took me on a route-march round the local park, in quest of fresh air, a cup of coffee and some cake. Regrettably, the prosthesis doesn’t seem to have been fitted well and it has recently worked loose, distorting her leg and causing a lot of pain. Limping, her lips pinched tight to stop herself from complaining about it, bereft of the unflagging energy that previously took twenty years off her, she suddenly looks old. Second Youngest Uncle is taking her to his home for a few weeks, the plan being that she will stay with him until she has recovered from the revision surgery. Then she will move into a bungalow. But before arranging this, we needed to clear Mum’s house, so the prospective purchasers could move in as soon as they were ready, without us having to run around packing while Mum is immobilised. This weekend was the final push.

Mum had done a sterling job of packing loose items in tissue and butcher’s paper and stowing them into cardboard tea-chests. My sister, who lives fairly nearby, has been nipping over and getting things out of high cupboards and off the top of wardrobes for sorting, packing or dumping. Not a jar of preserves remained in the pantry, nor a sheet in the linen-cupboard. Various bits of surplus furniture have been donated to charity and two skiploads of miscellaneous unwanted items disposed of. Much of this weekend was about dismantling furniture that could be taken apart. I spent a whole morning mummifying mirrors and glass doors from bureaux or book-cases, in bubble-wrap. The afternoon was devoted to swathing all my father’s antique clocks: removing the pendulums and delicately stuffing the mechanisms with tissue to immobilise them in transit, before bubble-wrapping and boxing them.

Saturday evening was needed for emptying the attic, unpacking the contents of trunks and passing them hand to hand, bucket-chain-fashion, down the steep, narrow stairs from the attic and the wider ones to the ground floor. Then the trunks themselves came down two flights, to be repacked in the hall. The last (and heaviest) box wasn’t a trunk, but a squat chest with ten wide, shallow drawers. Each drawer, only three or four centimetres deep, was divided up into dozens of match-box-sized compartments.

“It’s a printer’s type-chest,” said Eldest Uncle, as he carefully transferred a drawer without spilling the contents. He fished out and displayed a couple of minute, oblong metal slugs, each with a back-to-front letter on one end. Most of the drawers, however, contained household hardware. A drawer full of nails and panel pins, sorted into the little boxes by size. Another drawer of screws, divided into steel and brass and graded by length and thickness. A drawer full of washers, metal and rubber; and a drawer full of odds and ends – jubilee clips, sink plug chains, various amperages of fuse, replacement bulbs for Christmas tree lights, all sorted and labelled as neatly and methodically as a museum exhibit. It was so characteristic of my father’s meticulous precision, that I almost looked over my shoulder for him, to pull his leg about it, before I remembered.

Sunday was about the garden. My mother’s container plants, which include things like acers and other trees in ginormous pots, have needed a whole van to themselves. We team-handled them onto a sack-barrow and trundled them, wobbling ominously, round the intricacies of the garden paths, from the courtyard to the side of the garage. We stacked garden furniture and the washing hoist.

When it was finally done, I went for a last walk around. I’ve not really been into the garden since Dad’s death. The garden was mostly his place – Mum did weeding and dead-heading, but Dad did landscaping, mowing, planting, pruning and harvesting; so despite all the pots going, most of ‘his’ garden is staying put. No-one can move the massive oak, or the mature maple with its metre-thick trunk (set in sixty-something years ago, as a sapling, by Mr. Batt) or the gnarly apple trees, left from when the land was a market-garden and orchard and cossetted by Dad into annual cropping, nor the stone- and brick-work of the ornamental raised beds that he built, now studded with sea-thrift, lavender and curry-scented helichrysum.

In my mother’s herb garden, the sage and thyme are in flower and full of bees. The rhubarb patch is flourishing and the gooseberry and currant bushes are jewelled with unripe fruit, but the strawberries, untended since my father died, are sparse and stunted. I thought I had found a more or less ripe one, but when I turned it over, a cloud of tiny flies mushroomed out of it, and all that was left was a damp, pink, hollow shell.

In the long grass under the orchard trees, oxeye daisies stood tall, and beyond was a drift of dark-pink dianthus and a firework explosion of mallow in the hedge. I took pictures. Lots of pictures. But you can’t photograph scents, and my father begrudged flowers growing room if they didn’t smell as good as they looked. The pinks smelled of cinnamon and further down the border, the mock-orange was in full, honey-scented bloom. I went from rose to rose, taking photographs and inhaling lungfuls of the delicate, powdery perfume of the pale-pink Albertine climber rioting along a fence, the sweetly spicy smell of the old-fashioned roses with their crimson-edged petals and the fruity, slightly acidic scent of the more modern varieties.

At last I came to the end of the garden, where the bonfire platform sits. I turned and saw my brothers, all lanky six-footers like Dad, wandering about on the other side of the vegetable plot, somehow dwarfed and isolated by the expanses of grass, foliage and flowers. I looked to the side of the platform, at the patch of turf that is still a different colour, and I wept. My brothers hurried over and hugged me.

“Tea,” said Youngest Uncle, firmly, tugging me in the direction of the house.

“I hope the new people like rhubarb,” said Eldest Uncle, eyeing the abundance of large, shiny leaves. He went over, pulled an armful of sticks and put them into his car. In the back porch, my father’s old, faded gardening anorak still hung, emptily describing his absence.

On Monday morning, my mother was up at 5.30, lining up dusters. The removal vans – three of them – arrived at half-past eight and as the men cleared each room, she hoovered behind their heels and wiped down paintwork and windowsills. The removers and my brothers rolled their eyes. Eventually, Mum was persuaded to relinquish the vacuum to my sister and go to a neighbour’s, to rest before her journey. At noon, the caravan rolled out, and after a number of stops, it arrived and was offloaded by 8.30 pm. Mum went to bed at nine. It’s sixty-five years since she left school and her parents’ house, and now she has left the home she knew for longest.

But in a garden that henceforth exists only in memory, my father is forever at the far end, his shirt hung on a branch, his lean, brown back warmed by the sunshine, whistling a conversation with the robin as he digs over his strawberry-patch.

*****

She’s leaving home / after living alone / for so many years.

Bye bye.

Game and Set Jelly.

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Grenouille: “Mum, you have to help me get dressed! My arm’s sore!  And my foot!”

Me: “Oh, dear…”

G:  “I think it’s from PE yesterday.  I can’t walk properly!” (hobbles around the bedroom with a dramatically lurching limp).

Me: I’m sorry to hear that, what were you doing that made you so sore?”

G: “I was tennising.  (pause)  Can I have some of Dad’s smelly jelly?”

(Goes off to school, trailing a pungent wintergreen aroma of Deep Heat.)

*****

Alarming.

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Another week, another inquest. Actually, this week, two of the ghastly things: Oliver McGowan‘s in Bristol and Danny Tozer‘s in York.  The Bristol Post is doing a sterling job of summary reporting of what was done to Oliver and how it is being presented in court (big shout-out to the Post’s education reporter, Michael Yong, whose coverage of this epitomises local journalism at its finest).

Meanwhile, George Julian is live-tweeting Danny’s inquest.  There are grim similarities between the treatment of both these young men, and also with what was done to Connor Sparrowhawk.  All three had epilepsy, autism and varying forms of learning disability.  All three had their epilepsy discounted, being treated as though its symptoms were behavioural or mental-health problems, rather than signs of a physical brain malfunction.

Danny’s epilepsy manifested itself as tonic-clonic seizures, the sort that used to be called ‘grand mal’.  It was known that if one of Danny’s seizures lasted more than five minutes, he needed medical attention, and it was also known that he was susceptible to seizures at any time.  The logical inference to be drawn from this was that Danny shouldn’t be unobserved or unmonitored for more than five minutes at a time, but the implication seems to have eluded the people supposed to be looking after him.  He was routinely left for ‘fifteen to twenty minutes’ in the morning for ‘private time’ (masturbation).  Danny’s Mencap ‘independent living placement’ (rebadged residential home) had installed a seizure monitor in the form of a movement-detector placed under his mattress, linked to a remote audible alarm.  But when it went off during Danny’s ‘private times’, this appears to have been assumed to be due to his movements while masturbating, rather than to any resulting seizure activity.  It also ‘was going off frequently throughout the night’, according to John Andrews, the waking night worker who gave evidence yesterday.  He reported the fact to his managers.

The alarm, appropriately for an emergency warning, was loud: “Like a fire alarm”, according to Angela Stone, one of the day workers.  Inconveniently loud.  “It was going off disturbing everyone” said Ms. Stone.
So the engineers were called to ‘tweak’ the monitor.
“I
t was a case of getting the settings right”, explained Ms Stone, adding, “I don’t know where I’ve got the word settings from.”
That suggested that some, at least, of the people working with Danny misunderstood the gravity of his condition.
Ms Stone was categorical: “I felt <bed> was a safe place for Danny, we had the mat, we knew that worked, he wasn’t seriously epileptic.”
Myself, I can’t imagine in what universe repeated tonic-clonic seizures are considered ‘casual’ epilepsy.

There was no mention, yesterday, of what clinical advice, if any, was provided to the engineers to ensure the revised settings were still suitable to keep Danny safe, nor any mention of a medical opinion being sought about the ‘frequent’ alarms.  Tellingly, when Danny was found in bed, grey and not breathing, on the morning of his death, the forceful, rhythmic activity of cardio-pulmonary resuscitation did not trigger the system.
It suddenly struck me after everything was over”, said Ms. Stone, “We’d not heard the alarm go off. I couldn’t get my head around why we hadn’t heard the alarm go off.”
In a gruesomely farcical passage, she described herself and her manager checking the alarm:
“So Rachel, the manager, and I went to Danny’s room to look at the mat, that was the first thing that occurred to us, something had happened, something was wrong. The mat was on, the light was green.  Rachel showed me how you had to move around in a certain way to set the alarm off, and the alarm went.”
“Who got on the bed?” asked the coroner.
“Rachel,” said Ms Stone.  “I didn’t have a clue how to do it.”
Nope. No clue.
Is it possible that the sensitivity of the mat’s ‘settings’ been so narrowed as to render the sensor useless for practical clinical purposes?

Jo Fannon, Danny’s 1:1 worker on the morning of his death seemed nearly as uninformed.
The Tozers’ barrister, Ben McCormack asked her, “You mentioned earlier that the only time you’d heard it was when he was having private time, was there any chance anyone would have turned it off?”
“No,” said Ms Fannon, “You’d never turn it off.”
“Had it ever been set off by someone sat on the bed talking to Danny?” asked Mr. McCormack.
No,” said Ms. Fannon. “It required momentum.”
Mr. McCormack persisted.  “You mentioned it was changed, were you aware of the defects, what was wrong?”
“I wasn’t aware of the defects,” said Ms Fannon, “But it was replaced.”

I may have mentioned that G uses a number of machines.  They alarm from time to time.  If they do, I NEED to know why, in order to be sure that the action I take is appropriate and also to be aware for the future if there is a pattern of events.  If there is a pattern of events, I need to know the underlying causes: Is G unwell, or is there an intrinsic flaw in the tech?  Machines provide information.  Some do a limited amount of analysis for you, within human-defined parameters and algorithms.  They do NOT replace thinking, and they are absolutely pants at intuition and human empathy.  It’s more than regrettable that some people don’t seem so hot on these human functions either.

Now, we all know there are numpties who will take the battery out of their smoke alarm because their inability to master Toast-Making Without Charring means inconvenient decibel-levels.  But I was trying to imagine what staff would have done if a real fire alarm had gone off.  And I bet it wouldn’t have been to call out the engineers to modify the noise.

“Hi, Maple Avenue here, can you send out engineers to turn the fire alarm down? Keeps making a helluva racket. We want it so it only goes off if the fire moves in a certain way, with a bit of momentum.”

Quite apart from anything else, they’d have been as at risk as the residents of getting fried.  Because it would have been their lives on the line, and not just Danny’s, they’d  have dialled 999 for the Fire Brigade, straight away, no question.  So why were the engineers, not the emergency (medical) services, called for Danny?  Did he as an individual not matter?

It’s worse than alarming.  It’s terrifying.