“Mum. I’ve got a dodgy stomach Mum.”
“You’re going to school LB.”
“Dodgy stomach Mum.”
“School LB.”
“I don’t like you Mum.”
“Eh? How can you say that? I grew you.”
“No you didn’t Mum.”
“Where did you come from then.”
[points to the dishwasher] “There Mum.”
Eek. Determined to take photos today for the first time since the masterclass. A few sneaky numbers on the walk from the bus to the office. And then home again. Breathe. Breathe. Breathe. Get close. Shoot and deal with fall out after. Breathe….
I stopped LB happily mending the downstairs toilet this morning, once it started leaking. He went apeshit. With a spanner in his hand. The language was dripping with expletives and the toilet seat took a hammering. With his head. He stormed passed me and went upstairs. I hung up some shirts in the wardrobe and the rail fell down. The rage continued upstairs, directed at me. I put my keys in my pocket and hovered near the front door. Billy Joel’s The Stranger came on the radio.
Yep, I thought. That just about sums it up.
“Hey LB, how was Trax?”
“Good Mum.”
“What did you do?”
“Looked around Mum.”
“Wow. What did you see?”
“Car workshops Mum.”
“Cool. What else?”
“Many many more Mum.”
“Many many more what?”
“Car workshops Mum.”
“Very cool. When are you going to start there?”
“Wednesday Mum. I’ll wear my blue onesie.”
“Maybe call it an overall there, eh LB?”
Got my first negative blog comment (on the ‘about’ page) this week. From someone from the masterclass of all places. Anyway, it raises the issue of should I be writing about LB on this blog? What right do I have to do that? And shouldn’t he be telling his own story?
Well the latter is easy to answer. Yes, of course he should. If he wants to.
The other questions are less straightforward. I had a long chat about this recently with a colleague who has a long term condition. She said she felt a bit irritated by her mum always telling her story over the years. And still.
Tricky.
I don’t think people have their own, exclusive, story. Disconnected from those around them. There are multiple stories that overlap with other stories. On this blog, I’m not telling LB’s ‘story’. I’m recounting the experience of being LB’s mum.
I think it’s important to share these experiences not least to raise awareness of the lack of support for learning disabled children/adults but also because LB’s ways of being and doing makes visible mainstream practices that are taken for granted and unquestioned (see The Unlikely Ethnographer).
It has also had (the unanticipated) consequence of providing other people with a way of chatting to him and about him, and asking after him or about him. It’s given him a space to be known. I kind of knew (but being immersed in the everyday chaos that comes with a less straightforward life didn’t really do anything about) how difficult it is for people without experience of difference to engage with it. This meant that LB was often not a part of my interactions with the wider world. Now he is. In an ordinary way. As a funny dude who loves lorries.
Chewy stuff.
Spent the weekend at a street photography Guardian Masterclass run by Antonio Olmos. Well what can I say, other than a complete pleasure. Great teacher, classmates, setting and food. I learned a lot (see below).
Top things I learned;
One of my birthday presents was a bell so I could ring for ‘service’ (wine, newspaper, clean towel, etc) when in the bath. I know. It’s a laugh riot in our gaff. On Sunday, LB was about to get in the bath when I realised the full potential of the new, shiny bell. LB loves baths but has quite a way to go to mastering effective tap control (heat and quantity). We run it for him and leave him to soak. Trouble is, it’s tricky to decipher general chatter from a help request (or outright alarm). This means he doesn’t get much privacy. Dinging the bell could resolve this.
“So LB, if you want anything ding the bell. Like this…” DING!
“Yes Mum.”
“Ok? If the water gets too cold or you need anything, just ding.”
“Yes Mum.”
“Ok, I’m going in the other room.”
“Yes Mum.”
DING!
“Wow. That was quick. What do you want?”
“I love Irish lorries Mum.”
LB’s been off school a week now. Unmanageable distress associated with school, which manifests itself in violent outburst (towards himself and others), has led to a kind of informal home arrest. Home where he is largely a chill pill. Home which ain’t ideal when we both have full time jobs.
School are going to try to sort out some way of him returning part time. The plan was for him to stay at school until July 2014. A ‘mental health’ referral has been made with no one involved optimistic that this will happen within 4-6 weeks. The care manager (who had discharged him after success at panel finger nail blackboard towards the end of last year) called today to sort out some sort of interim ‘care’ for him.
“Well he can go to respite pretty much straightaway…”
“What do you mean by respite?”
“He can go to Saxon Way. Into respite. I can get the manager to call you.”
“Sorry, I don’t understand. What is it exactly?”
“Well it’s a building.”
“Eh?”
“It’s a building with a snooker table and other stuff to do. He can stay there or maybe the staff will take him out into the community. Or if you prefer, some staff can come to your home and look after LB there. The advantage is, it’s pretty much an instant solution.”
So, after apparently huge shifts in the organisation of social care in the UK, the development of aspirational thinking around person centred care, and having spent 16 years in education, LB is consigned to a building with a snooker table. At the first hurdle.
I don’t get it. What about his future? His life? His capacity to be meaningfully productive in some way? He’s 18 years old and should be looking forward to the start of his adult life, some type of employment and everything that comes with that. Not written off and stuck in a day centre waiting for a half arsed referral to fictional mental health support. Seriously?
I must be missing something.
Surely.
Dear woman in the restaurant,
We were the people you spent your meal staring at. Or was it glaring? I’m not sure. It was fixed and unwavering which ever it was. And it made the situation so much worse. I’m not going to apologise for LB’s behaviour. He was stressed from the start (getting stuck in the revolving doors on the way in probably didn’t help), but for the most part he managed to keep a lid on it. He muttered to himself a lot, and tensed his body regularly, but only a couple of times did he actually do anything that could have disturbed your meal. Two, possibly three, very brief shout-outs about his fear of Irish lorries being stolen.
As you were staring so hard, you may have noticed that the three of us, Rich, Tom and I, were all working hard to try to keep him calm. There was a lot of talk of the security arrangements at Irish lorry companies and attempts to distract him with a running commentary of the Oxford buses driving past the restaurant. A lot of remedial work, as Erving Goffman, would call it. To be honest, this work was largely try to stop LB experiencing such stress rather than concern about other diners.
I’ve sat in plenty of places and had to listen to other people’s conversations because they talked so loud, I’ve listened to people shouting on mobile phones, sat near parties of people being drunkenly cheerful and excessively noisy. These people don’t get stared at. These behaviours are tolerated.
I’m not sure what you were hoping to achieve with your staring. To let us know some social rules were being broken? To let us know that young people like LB are not welcome in public places? Or to demonstrate that your meal was ruined? The latter would be peculiar. You were sitting far enough away not to look at him, and, as I said, other than the quick shouts, he was pretty quiet.
It was my birthday lunch. I wanted LB to be there (obviously), and don’t think it is (or should be) a big ask for you to just get on with your meal and ignore the odd disruption. Anyway, we got the bill before we’d finished our main course. And left. Staring, or glaring, like that, can sometimes make a difficult situation unmanageable.
Maybe next time, you could just take a few seconds to try to imagine what it must be like to experience that distress, or have to try to manage it. It ain’t rocket science, it’s that thing known as empathy.
Yours,
Sara
New job, early morning meetings in Oxford and butchery preparations. Morse would be proud.
mydaftlife 