The school play

LB, Rich and I went to watch Tom in his school’s production of The Wizard of Oz. It was deliciously brilliant and the hours and hours of practice the cast had put in shone through. LB started muttering to himself about 50 minutes in. Stamping on the floor of the tiered seating. People started surreptitiously looking. Curious.

Disruption of public space has long been an interest of mine. Through years of experience and studying it. How much ‘disruption’ is acceptable and why? In what contexts? My bar is set fairly low so I didn’t mind LB chittering on too much. Either people accept unusual behaviour in public, or certain people who can’t conform to (often spurious) normative standards can’t join in. Uncomfortable discussions around ‘what about people who buy expensive opera tickets and expect to be able to watch it without disruption?’ (as Len Davis once discussed at a memorable keynote talk) weren’t relevant here. I thought.

It got hotter and hotter in the hall and LB got increasingly agitated. Clenching his whole body and shuddering.

“WHAT.EVER!” he finally shouted out when the Good Witch told Dorothy to follow the yellow brick road.

“I’d better take him out,” whispered Rich, who was sitting nearest the aisle.
“Let’s wait and see,” I said. “It must be the interval soon…”

The songs continued, the heat rose and LB was tipping into full blown agitation gesticulating at the ceiling, bouncing on his seat and full body clenching. It was time to go. Rich manoeuvred him out and took him home, after a teacher brought him some water. He did well really at keeping a lid on it.

I stayed for the second half. Enjoying watching Tom and his mates singing, acting and dancing their socks off. With niggles about what had happened. The enjoyment was great.  The niggles were a bit more complicated. It’s upsetting having that kind of experience. For all sorts of reasons. There are going to be enduring tensions between us (and others) making LB do (some) ‘typical’ things that he doesn’t want to do. Sometimes these things will be necessary, sometimes because we want him to.  He should have been able to sit through the performance, as he sits through other things he enjoys. I was reminded of a friend’s husband saying to her in frustration “When are you going to realise our lives are less than straightforward?” after their son, one of LB’s classmates, had to leave a candlelight carol service at Christchurch College after repeatedly trying to blow the candles out.

I  think LB (and other dudes) should be able to attend events with a leniency allowance. They may not sit quietly for the duration. LB gets very involved in things and the audience could suck it up really… within reason. And they seemed to in this context. In the interval and later people (friends, parents and teachers) asked after LB with genuine concern/interest without being intrusive.  But there were the performers to consider here, too. A dose of ‘heckling-type’ behaviour could throw ’em right off track. Which ain’t ideal.

I collected Tom at the end of the show. A mix of excitement, exhaustion and smudged face paint.

“When did dad and LB leave?” he asked.

Crispy duck, buses and Tulisa

LB’s 18th birthday. As usual, he only wanted to open one present. The thing he’d asked for (little mechanic/bus guys). Then off to London for crispy duck in Chinatown. The trip involved a bus journey, a walk from Baker Street to Chinatown and a constant backdrop of London buses (and statements.)

“Mum. I wish I was a Londoner Mum..” “Mum. I wish I was a Londoner Mum..” “Mum. I wish I was a Londoner Mum..”…. “Mum. I wish I was a Londoner Mum..”
Then out of the blue, crossing Oxford Street, “MUM. WHERE’S ROSIE MUM?

Wow! How cool is that??? (First time he’s asked since she started university over a year ago). I said we’d skype her when we got home.

The food was good and then it was back to Marble Arch to wait for the bus home. Big Bus Tour buses stopped at the same stop which was great. An added layer of deliciousness for the birthday boy.

After we’d been home a while, I found LB sitting in the kitchen on his own. He was waiting to skype Rosie. Sob.

Later, after a big fun filled skype session with everyone pitching in, we all (apart from Rosie) sat squashed on the settee, with crisps and pop, watching X Factor. LB loves Tulisa. She’s a Londoner.

“Mum, I wish Tulisa was my sister Mum.”
“Eh?”
“I wish Tulisa was my sister.”

Football club

“Hey LB! Did you go to football club after school?”
“Yes Mum.”
“What was it like?”
“Fine Mum.”
“Cool. Did you score any goals?”
“No Mum. I was the goalie Mum.”
“Very cool! Did you save lots of goals?”
“No Mum.”
“Oh, did you let many goals in?”
“Yes Mum.”
“Oh. How many did they score?”
“Hundreds Mum.”
“Oh. Never mind. Do you like playing football?”
“No Mum. Not really.”

Another day, another cone…

Went to a meeting yesterday where I ended up wearing a cone of shame once it became apparent how I’ve largely ignored sexuality in my research. Evidence highlights differential health and social care outcomes for lesbian, gay, bisexual, transsexual, transgender, intersex peeps (LGBT) and yet, despite making a claim for ‘diversity’ in my sampling, I haven’t actively recruited LGBT participants.

My cone of shame was a bit bigger than usual as I’ve been looking at ways of making research more inclusive recently.  I’ve written and ranted about how we exclude certain ‘groups’ of people from studies, only actively seeking their involvement if the research is focusing on their ‘group’. We ascribe people in these groups a kind of meta-status that obscures other dimensions to their identity. Learning disabled peeps are an obvious example here. The learning disabled identity is so all encompassing that researchers (or others) would rarely think to recruit learning disabled people to a broader study about relationships or cancer or living in a rural area. (And if they do think about it, that thought can be dealt with neatly and speedily by a throwaway statement in the methods justifying their exclusion on ‘ethical’ grounds.)

So, the research community is sustaining and reinforcing exclusion through research practice. ‘Specialist’ research focusing on learning disabled people (or sex workers or asylum seekers or traveller communities or homeless people – the list is pretty extensive) can be ignored by the mainstream world cos it ain’t relevant. Instead, what is considered mainstream should be challenged through more inclusive research practice.The concept of ‘ableism’ offers some tasty insights here, as Fiona Kumari Campbell asks how the fiction of “the able bodied person” has been sustained over time when there is such variation among people? (see a chirpy and stimulating interview with FKC about this here).

Of course you can ask the same question of the dominance of heterosexuality. Discussing the current cone with a couple of people the challenges raised were about disclosure and relevance. ‘People may feel uncomfortable disclosing their sexuality to a researcher…‘ Well we ask ’em to state other ‘personal’ details so not sure why sexuality is any different. They don’t have to tick any boxes if they don’t want to. It ain’t going to be a deal breaker. ‘Sexuality may be less relevant in some health conditions than others…‘ Er, that is missing the point.  And so on.

But then I got to thinking that maybe cones of shame aren’t cones of shame at all. They’re cones of reflexivity which will inevitably involve uncomfortable feelings at times. It’s all part of the gig.

Doreen and Sam

I met up with Doreen this morning on the bus to work this morning. Doreen worked for social services for 20 years as an escort and took LB to school for about 2 years five or six years ago. We loved Doreen.  She was sitting with Sam who was on his way to work in the café at Oxford Brookes. It turns out Sam used to go to LB’s school so we did a lot of catching up with different kids from the past.

D: Oh yes, we used to pick up Ben T at Radley Way and then go on to Rose Hill for Sarah H, she was a funny one and then back to Barton for Tom L. Then there was James C…
S: James C? Awww… you’re kidding me! I know James C from Anjali Dance Group.
D: Yeah, James C and then Donna T, do you remember? She was at Saxon House for a while.
S: Donna T? Yes. Oh you’re kidding me! 
[hehehe]
D: And then there was Terry W…
S: Terry W? You’re kidding me!  Oh you’re kidding me right! I know Terry W from Mencap.
D: Terry W yes. I saw him recently in town. He came over and gave me a great big bear hug, as he does. But the person he was with told him off for talking to strangers. He said to her ‘That ain’t no stranger. That’s Doreen’.  I don’t know.  I see ‘em now and they’re all so grown up, but I still got photos of a lot of a lot of ‘em.  Anyway, I’m getting off here. Nice to see you both.
[…]
S: Do you know Joan M?
Me: Yep, I know Joan M. Do you know Danny F?
S: Danny F? You’re kidding me! I know Danny from Mencap.  Mencap.  Terry W. was in town. Why did the carer do that? They were wrong. Terry knew the lady sitting here. He knew her and they were wrong to say ‘don’t talk to strangers’. She wasn’t a stranger. Fucking outrageous. They were wrong. Do you know Daisy?

The phone (2)

If we ask LB to get the phone, he usually shouts at it “Whatdoyouwant???” until it stops ringing. Tonight was progress. With a big fat P.

“LB! Get the phone!”
“Who me Mum?”
“Yes, quick!”
“Do I have to Mum?”
“Yes, quick before it stops ringing.”
“BLOODY PHONE. I hate it.”
“Just do it.”
“HELLO! HELLO! WHAT.DO.YOU.WANT??”
“Who is it?”
WHATEVER!
“Who was it LB?”
“Recorded message Mum.”

Making puttanesca sauce

“OK LB. I’m going to make some puttanesca sauce. You like that, don’t you? Very posh n’ Nigella.”
“Who looks after buses Mum?”
“Mechanics?”
“Mechanics Mum?”
“Yes..”
“And London buses Mum?”
“Yep, mechanics look after London buses.”
“Why Mum?”
“Because they have to stay roadworthy. Keep the passengers safe.”
“Yes Mum.”
“Now I need to find some olives…”
“Who looks after lorries Mum?”
“Mechanics.”
“Mechanics Mum?”
“Yes…”
“Mum? Who looks after coaches Mum?”
“Mechanics… Crap the olives have gone mouldy…”
“Mum?”
YES?
“Who looks after settattas Mum?”
“Settattas?”
“Settattas Mum. Who looks after settattas?”
“I can’t understand you LB. Say it clearly.”
SET. TAT. TAS.”
“I don’t understand. Say it clearly. Mouldy.bloody.olives.”
SETTICTANKS MUM.”
“Septic tanks???”
“Yes Mum. Who looks after settictanks?”
“Mechanics.”
“Mum?”
“Yes LB?”
“I wish I was a Londoner Mum.”

LB’s support plan

So the dreaded visit from LB’s Care Manager passed off painlessly today.

LB sat very patiently while she gave information, apologised for using jargon and went through his support plan. Then she got to the big question:

“What three things are most important to you in your life?” [these can relate to any aspect of your life – aspirations, outcomes you wish to achieve or things you are keen to maintain or be able to do again.]
[silence]
“LB what things are important to you? …”
[silence]
“What is important to you? It can be anything at all… Have a think…Is it your mum and dad? Or your family?”
[silence]
“Can you think of one thing to start off with?”
“Bus spotting.”
“Ah. That’s good. Can you think of anything else that’s important to you?”
“Lorry spotting.”
“Brilliant. One more thing…”
“Coach spotting.”
“Fantastic.”