Author Archives: sarasiobhan

Home movies and translation

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As a prelude to two days annual leave, I started to ‘sort out’ stuff yesterday afternoon. A painful experience. Partly because it highlighted my (our?) hoarding tendencies groan, but also because it made visible the way in which our lives were disrupted/interrupted/put on hold a few months ago. This interruption – still no effective words for this – was apparent through opened but discarded post and other overlooked detritus.

Shudder.

Anyway, one positive to the sort out was finding home movies that had been missing for several years. They’d fallen down the side of the desk where I’m sitting typing this (the darker reaches of sides and behinds that are only explored when annual leave beckons).

I took time out of sorting to graze this footage. Sob. Where.did.the.years.go???

Various things jumped out, including a trim version of Rich *cough cough* and the total cuteness of the kids. And LB’s quirkiness and humour shines. In one scene, he’s jumping up and down with excitement during an Easter egg hunt, completely missing any eggs even when gently guided towards them repeatedly by Rich. In another, he’s sitting eating his tea with Rosie and Tom, wearing a cycle helmet, his ELC police tunic and a pair of googles. Hilarious. Why was this version of him absent from every ‘official’ report/discussion over the years?  Looking back, we were completely derailed by a system which delivered so little. I can remember LB and Rosie being filmed by a paediatrician at an assessment centre as tots. She wanted to capture his “non-interaction” and “own world” stuff on film for teaching. Makes me cringe now but in the early days of crash landing into ‘special needs-land’, you invest so much hope in these professionals making your child ‘better’, you do pretty much anything they suggest/ask. Hunter-gatherer diet….? Er, let’s not go there.

Framing ‘learning disability/autism’ as a negative, needing treatment, repair or containment [yes, I know. The irony] rather than engaging with LB (and other dudes like him) as individuals, means that support is pretty much useless. And as I keep saying, support that don’t support, ain’t support.

So what advice would I give my fifteen year ago self?

The dude’s different, and he’s always gonna be. Get over it and get on with enjoying what he brings to the party. Oh, and don’t get too hung up on all those meetings with health and social care professionals. They ain’t as important as you think. Really.

‘Busy behaviour’ in the ‘Land of the Golden M’; The sequel

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ryan5-195Bit of groundhog day this weekend. My PhD (started about 10 years ago now) focused on going out in public places with learning disabled children and McDonald’s featured consistently in the interviews with mothers. Or the ‘Land of the Golden M’ (as it was then) as one mum called it.

Children’s ‘busy behaviour’ was tolerated, the food arrived quickly, it was always identical (very important to a lot of kids who were on the autism spectrum) and sprinkled with that magic dust that makes it pretty taste-tastic for kids.

Regular readers will know that now LB is offered choices in a fairly blunt way, it can be difficult to encourage him to do things. Last weekend he said no to going out with us, so this weekend, we decided to fall back on the old favourite and offered breakfast at Mooky D’s. An instant “yes”.

Wow. Changes afoot in the Oxford branch; self service machines and a new queuing system. Even better for the less than patient. It was fast and we had a laugh.

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LB was in great spirits and, once he’d noshed every bit of his food and drunk his milkshake, chatted about scrapyards and tyre disposal. Perfect.
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The cockroach week

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We now have a dead (I hope) cockroach in the freezer.

It was hanging out with some carrots and leeks in the bottom of an organic veg box. The size of a small elephant. The freezer wasn’t our idea but the advice of the veg box company’s resident insect expert (a PhD in moths apparently, but turns her hand to other insects). Cockroaches don’t like the cold and it’s heading off on a journey to London Zoo for identification on Monday. Doc Moth thinks it’s a Periplaneta australasiae from the image I emailed. Rich thinks it’s an American one. Whatever. Whoever. My organic veg box days are over.

ryan5-272Randomly, it’s not the first cockroach of the week. One of LB’s unit dudes had a right old chuckle enjoying people’s responses to strategically placed giant plastic (but very lifelike) cockroaches around the unit midweek. Love him.

Then this evening, I was reading about Mencap’s  latest campaign, Steve and Sam, and was floored to see that Winterbourne View was called a ‘treatment and assessment centre’. I hadn’t picked up on that at the time.

So a further layer of hideousness to what happened there.

Is that possible?

Cockroach week.

The Unit. Day 50

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Back from work this evening to find Will here. Fab surprise.  He drove me [????] round to see LB. Yes. He drove me round to see LB.

We found LB in the living room with his DVD playing on the big screen. Everyone sat around, chatting a bit. Watching the film. Hot Fuzz. Peaceful times.

LB didn’t really say much but Will caught his attention a few times – with mention of Chunky Stan and his work trip to Somerset tomorrow. And Eddie Stobart of course.

50 days later.

Wordgames and DoLs

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I got a call yesterday evening, after visiting LB. Awkward, awkward, awkward. The ensuing discussion erased any memory of the guy’s name or credentials but he’d been in to assess LB that afternoon to decide whether he was being deprived of his liberty or restricted in his movements.

Eh???

He was surprised and shocked we knew nothing of this visit especially as he knew we were going to visit LB shortly after his visit.

Eh???

His assessment involved conversations with LB and two staff members, and his conclusion was;

  • LB is restricted but not deprived of his liberty because he isn’t trying to abscond when out of the unit, is offered regular options to leave the unit on outings (which he regularly turns down) and hasn’t said he wants to leave. Although he did tell the guy he didn’t want to be there. Conclusion: apart from the locked door, there is nothing stopping him leaving.  

 

He wanted to know what I thought about this.

Wordgames. That’s what I thought about it. Wordgames, spin and nonsense.

Waiting for the train

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Some mornings I walk along to the station next to where I work to buy some lunch.  And photograph this space. I love the light, the patterns and what people are doing here. Spectacularly compelling. Well for me, anyway. But then I bloody love railway stations.

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Choice, Bond and bus tickets

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Rang the Unit this morning to see if LB wanted to come to town with us and have some nosh out. He’d been to the farm on Friday and had been quite chilled over the weekend.

“Maybe. Maybe not,” was the answer. This means no. I rang back a bit later to see if he wanted us to get him anything.

“No, thank you,” he said to the staff member relaying the question.

“Can you ask him if he wants a t-shirt or a dvd, or anything?”

The answer was “DVD please.”

Rich, Tom and I went into town. Tom started chatting about when we’d gone to watch Skyfall with LB. I’d forgotten, but Tom remembered how LB had sat patiently in the dark waiting for the bright daylight fight scenes so he could read his bus ticket. Hilarious. Kind of.

There’s something here about choice and constraint. But also about difference and tensions around making sense of our lives and the social world we live in. I still think of LB as an unlikely ethnographer, but that doesn’t help us understand how he makes sense of his life. This remains a mystery really.

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The Unit. Day 45

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From yesterday. Bit-post. Unfinished through lack of words:

LB attacked a staff member at dinner time tonight. Unexpectedly. For no apparent reason. After some careful but excessive sauce action (tomato and brown) on his plate. This lead to restraint, more restraint and medication. The situation was explained to me carefully in detail when I turned up an hour or so later. 

“Er, can you claim for your shirt?” I asked his key nurse, inanely, after my other questions were answered (but left unanswered because there aren’t answers). 

There are also no words really to make any sense of this, without falling back on jargon and social care speak. 

I saw LB briefly after the debrief (and ripped shirt). He was in his room. I was armed with an alarm. He didn’t say much, just muttered really. I rang later that evening to see how he was, and the support worker (love her) went upstairs to check on him.

“LB, your mum’s on the phone. She just wants to know that you’re ok.”
“Yes.”
“Can I get you a drink or anything?”
“Yes.”
“What would you like?”
“Blackcurrant.”

 

May Day, Magnolia and Magdalene Bridge

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No buses across Magdalene Bridge this morning as it was closed to traffic for May Day celebrations. So it was a beautiful walk from St Clements, up the High Street. Past revellers on their way home.

A rare ‘Who will buy?’ morning.

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The Unit. Day 42

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The excitement of the trip to the bus museum had worn off by the time we visited yesterday evening. LB was in his room, subdued, having chosen not to go to the farm (again).

Choice eh? Very, very important that learning disabled people can make these choices, we’re told. Unlike many other people, who have no choices in their everyday lives. Yeah, it’s so much better that LB is able to choose to laze about in his bedroom all day (again), than get a good day’s exercise, sunshine, fresh air, hang out with different people and be productive. My arse.

Of course loads of people would choose the room-laze option over working. But they wouldn’t be given that choice on a daily basis. They’d have to (if they could) do something productive. And more than likely want to after a few days.

I’m getting pretty naffed off with this choice charade as you can probably tell.

Anyway. Back to yesterday evening.  LB’s bedroom was snug and comfy, with the evening sun shining in. He sat leafing through his Yellow Pages, with bus magazines spread across the floor. Jug of squash on the desk. It was calm and peaceful.

“Do you like it here, LB?” Asked Rich.

“Not really, no”, he replied, without looking up.