It’s funny really. You have a (learning) disabled child, the world kind of falls apart and then falls back together, bit by bit. There are unexpected highs, deep lows, challenging times and a backdrop of relentless meetings with professionals. These meetings are sort of necessary (because what else have you got without any reference points?) but pointless because there is a lack of real understanding or engagement with either your child, or your lives as a family. We eventually shook down, accepted LB’s difference and began to notice his humour, quirkiness and qualities such as generosity, lack of guile, artifice and his honesty. We treated the meetings with gritted teeth. And got on with life.
Then came the recent inpatient assessment and subsequent sectioning. I was tipped into mum redundancy (MR). Suddenly and without warning. The warnings for the impending hospitalisation were flashing brightly since Christmas, that was only really a matter of time (though it could have been circumvented with effective action). The warnings for MR were completely buried.
Call me old fashioned, but it strikes me if you have (not in an ownership way) children, you don’t really stop being their parent. I still tell Rosie what to do. She doesn’t always do it, but I feel I should provide some steer. My mum is still my mum. These are lifelong positions, that shift and change, but (commonly) remain centred on love, responsibility, reciprocity and a gut-wrenching desire for your child/ren to have the happiest, most fulfilling lives, possible. (I realise that this isn’t always the case).
This is confounded when the child is learning disabled and reaches that (constructed) age of adulthood. Necessary changes to the way in which learning disabled people’s lives have been conceptualised and understood, a shift from institution to community living, and the accompanying political call for self advocacy, autonomy and empowerment, has led to a focus on rights. I support this move completely. Learning disabled people, like anyone else, have the right to make decisions and be encouraged to have aspirations and the opportunity to lead fulfilled lives.
At the moment, LB has the right to decide whether he sees us or share his health information with us. The implications of these rights are substantial. The problem for me is, an emphasis on his rights can be misunderstood, misinterpreted, misused or treated as something discrete, outside of the broader family context. I believe, barring some thunderbolt shift in health and social care provision, that LB’s potential to lead a fulfilling and happy life will necessarily involve his family. For us to be sidelined at this point will have a potentially catastrophic effect on his life chances.
‘Eh? What’s that?’
‘He could have an advocate. S/he would look after his best interests.’
‘He turned down the opportunity to have an advocate. He doesn’t know what they are.’
‘With clear explanation, he can decide to have an advocate. He’ll be offered one again in ten days time, by the terms of his section.’
‘That’s great. But they won’t know him. Surely that’s important?’
Does our experience of LB’s family count for nothing?? Should an advocate be a substitute for that understanding, or instead complement it and work with families?
Once again we’re left without any guidance. It’s like being back at those early days when we knew there was something different about LB but given no guidance about what that meant, for him and for us. We’ve re-fallen into an unexpected space in which he is treated as a consenting and competent adult. A space which is so incongruent and so alien to our experiences of the past 18 years. Maybe it’s a good thing in theory. Maybe LB is at a stage in his life to shake off the confines of his family and do what he wants to do, without dishwasher duties or an expectation that he will join in social obligations. I don’t think so.
I keep returning to how this idealistic position ignores the current political climate and contraction of support and services for learning disabled people. As a redundant mum, I can use the hours I spent advocating for him (unacknowledged and unrecognised by services) doing something else. Like developing my beginner crochet skills,
Or maybe my/our expertise could be recognised and used to help LB in partnership with those who now (supposedly) help him realise his rights.
Got on the bus this morning with a £20 note. And no change. Not a good move.
The driver shook his head. “No change.”
“Arghhhh.. sorry, I haven’t got anything smaller.”
“No change,” he said, poking at his change drawer.
The guy behind me was jingling some coins.
“Can I get the change in town, when you’ve taken some cash?”
“Doubt it. I’ve got no change so far. The best I can do is a change receipt.”
“Ooh, Ok.. What do I do with that?”
“Take it to our depot in Outer Mongolia.” (teeny bit of embellishment there..)
“Isn’t there somewhere a bit closer to do that?”
“Oh, Ok. I’ll do that. But if you’ve got the change when I get off, can I cash it in with you?”
“No. I wouldn’t have any cash left if I did that.”
“Well you ain’t got any now..”
“Ok, I’ll take the receipt. Thanks.”
Fifteen minutes I looked up from Candy Crush. The bus had stopped, not at a bus stop.
Eh? I looked out the window. Where are we? Dunno, but everyone was piling off the bus. Speaking to the driver in turn.
“What’s going on?” I asked when it was my turn.
“Detour. High Street’s shut. The Queen’s coming.”
Through an increasingly common, though still unusual, turn of events facilitated by twitter*, I agreed to take some photos today at Turl Street Kitchen, a social enterprise cafe set up in Oxford, on the off chance they may be accepted for a piece about them in Vogue.
HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAAHAHAHAHAHAHAHAHAHA! Yes. Vogue. Stop laughing.
After a bit of a misunderstanding (I thought it was a group staff photo), I loitered there for 10 minutes this morning snapping customers, staff and space. The deadline was today, but as I was running a (slightly chaotic) focus group this afternoon, I didn’t get home till almost too late to look at the photos. There were a few quite goodish ones I hurriedly edited and sent to TSK. I got an email an hour later saying ‘lovely pics will get back to you in an hour’, then an email saying ‘they’re looking at the stool pic. Will keep you posted’.
O.M.G. They?? Vogue? Looking at my stool pic?????? Really??????
I looked at the stool pic I’d sent them. It was a bit fuzzy round the edges. I went back to the original photos. There was a much sharper photo I’d overlooked. A bit like I didn’t have enough shop vouchers at the end of the focus group earlier and wondered if I’d given someone two by mistake. It was tucked in among some paperwork. So careless.
I added the (heaps) better stool pic to my submission (is that the term?) but it was probably too late. I don’t suppose these big Vogue guns go back to look late entries. My almost hugely special-funtastic photographic moment dashed.
Finding the ‘missing’ voucher was important to the focus group participants though. Important to their sense of integrity. Much more so than a sharp photo of stools.
Vogue can wait.
*thanks to @abiccles for her thoughtful retweeting