Choice, Bond and bus tickets

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.



Has to be done today. In honour of my old Rosie turning up at 10pm last night as a Mother’s Day surprise. (Sob) After the shrieks and hugging, and after Tom had led Rosie up to her room to explain exactly how much of it he’d taken over for his stop motion films, we squashed back onto the settee (with the two dogs).

And it was lovely. So lovely to hear the kids chattering on together. Like the old days.

There is a lot of randomness growing up in a house with a learning disabled sibling. For years, there was a lot of terrible tantrums that could go on for hours and hours. These were so distressing for everyone, but from early on, the others seem to have learned not to moan, not to complain and not to say ‘What about me?’ There are too many ruined activities to remember really. Holidays cut short, days out that were a combination of military organisation and plain endurance.

Being on show in public is not something that many people like. But the kids have been in the centre of countless public situations where LB has berated people for (alleged) shoplifting, being ‘foreign’ or having some visible difference. Or just had a meltdown.

We went to White Scar show cave once. Britain’s longest show cave, one mile underground.  We put on our helmets (LB loves anything to do with emergency services) and set off in a party of about 20.  Our guide, a white haired cave enthusiast, led us along the narrow passages until we reached the highlight of tour; Battlefield Cavern. It was spectacular. The guide asked Rich to turn the light off as he was standing by the switch.  There was a collective “Aaaahhhhh…” as we stood on a wooden platform marvelling the glowing stalagmites and stalactites.  But switching off the lights was not a good idea.

LB started to quietly pray. Eh????

“Dear God, please get me out of this cave safely…”

We all looked at each other. A few people turned round to look at him.

Shh..LB. Shhhh now. Don’t be silly…”
Shhhhhhh LB…” hissed the kids, nudging him.
“God. Johnny English. Dear Johnny English save me, Johnny English…”
“…save me from the cave. Johnny English. HELP US. THE ROOF IS GOING TO FALL IN. WE.ARE.ALL.GOING.TO.DIE!!!”

Oh crap. Crap. Crap. Crap. Things disintegrated pretty quickly at that point. Britain’s longest show cave and all that. A mile underground. “Turn the light back on!“, shouted the guide, as Rich scrabbled round trying to find the switch. Children started crying, parents got agitated, LB kept praying. Loudly.

It’s probably fair to say we got out of the cave in record speed. A cross between a fast walk and a jog. Parties coming the other way were forced against the wall, as the guide, followed very closely by LB (still calling for Johnny English), went into emergency exit overdrive.

Eventually we saw daylight. LB stopped praying and cheered up.

“Funny little lad,” said the guide, panting, “is he alright?”

Despite these experiences, they all get on brilliantly. There is an easiness to their interactions, in which LB has a central role. Even though he doesn’t always respond. They all demonstrate an acceptance and understanding that isn’t articulated or remarked upon. It just is.

And I love it.


Cripes. I didn’t anticipate this blog would become overtly political or polemic. Sorry. Though maybe it was just a matter of time. I’ll create a new category so fun-loving, chilled readers have the option of ignoring these more confrontational, thornier, issues.

So, what’s the story? Well, here’s the Daily Mail, and Guardian blog version of what happened this week. To summarise, three guys with learning disabilities were refused the opportunity of taking part in a karaoke evening in their local pub because one of them in particular, James, ‘shouted instead of singing’.  They had taken part in karaoke evenings for six months before the landlord changed and their involvement was blocked.  The new landlord sticks by his story that  his decision to exclude their participation relates to their (in)ability to sing, rather than their (dis)ability. Continue reading