It was the My Life My Choice AGM this afternoon. It was dedicated to LB and the theme was happiness and laughter. It kicked off with a bit of spontaneous dancing to Will Pharrell’s Happiness. I ain’t a spontaneous dancer in any way but what a cracking way to start an AGM (or any meeting). There followed a series of ‘official’ (dosh and voting new trustees) and informal (laughing yoga and chatting about highlights of the year) bits. For a lengthy meeting, the organisation/design was exceptional.

I had a slot in which I gave a brief update about #justiceforLB and the ways in which MLMC had worked with/supported us. I forgot to copy my slides onto my memory stick but it didn’t matter. They’ve been so consistently supportive it was easy to recount the many examples.

There were refreshments and party poppers. New trustees were voted in. Disappointment among unsuccessful candidates managed by similarly disappointed candidates or the new geezers.

I live tweeted bits of the meeting. Michael ‘the Godfather’ Edwards was there. I was a bit in awe really. I remember reading an article about him years ago in a Sunday mag. How, in our local day centre, he spent his days sorting something like nails into different boxes. If they finished sorting before the end of the day (mid afternoon) the boxes were emptied back into the pile for re-sorting.

This story stayed with me. An almighty howl of frustration. LB was a pup at the time. I was determined he wouldn’t lead a stripped out, colourless, pointless life.

Michael was the ‘celebrity’ in the room. Held in warm respect. A lot of young dudes from the local college were present for part of the meeting. Some fidgeting and nudging. Some eye rolling.They chipped in. A student was voted one of the new trustees.

There were very few ‘professionals’ present. I googled the Michael Edwards article when I got home. It was from 2001. I was surprised it was so recent. Jan Walmsley was there today. As she was in 2001.

A piece of my heart broke a tiny bit more.

Yesterday Mark Neary flagged up concern about shared overnight care in warehouse type facilities. Responses to his post can be read at the #LBBill facebook page.

To summarise, it sounds like a cheap gig is being created through the sharing of ‘night’ care by local authorities/providers. Groups of people who are supposed to have support workers can be put to bed sharpish of an evening, leaving one support worker and ‘assistive technology’ on the nightshift (9pm-7am). Assistive technology can be alarmed doors to alert the (dozy TV watching?) night shift herb that an inmate is on the move. (This reminds me a little bit of the experience of my mate’s son.) Strikes me a bit dodgy that this technology can be increasingly (without question) used to surveil, monitor and constrain the movements of learning disabled people to reduce costs/workloads, while any mention of surveillance equipment to protect people from abuse is shot down in a fury of privacy arguments. (Bit of an aside, but I’m still flummoxed as to why we’re still banging on about post-Winterbourne when so many other abuses have happened since and LB died..(he died?) Is it the power of video footage or just another containment exercise?)

Most of us have some say in when we decide to watch the tv, have some nosh, go out, hang out or go to bed. It’s, er, part of being human. Bedding people down by 9pm (and probably much earlier in practice – again, see mate’s story above) for cost and containment reasons is surely breaching their human rights? And goes hand in hand with the shutting down (or more accurately, never opening up) of any sniff of opportunity, aspiration and imagination.

With LB’s death, the sledgehammer of fear no longer hangs over us. We no longer have to worry about how he will lead a (most optimistic scenario) basic life in the context of poor support, budgets cuts and a system which doesn’t recognise the humanity of people like him. And that terrible, terrible fear of what will happen to him when we ain’t around anymore. The worst thing imaginable has happened. In a context that will never ever make any sense to us.

I’m left now, outside this circle of fear, wondering what the fuck is going on? Why are we discussing proposed changes post this/post the other when the beacon that is independent supported living seems to be morphing into a mechanism for managing people on the cheap? An update today on the Bubb report (sigh) talks about new buildings and a (sinister) skills academy. No doubt with hefty contracts for state of the art assistive technology. The potential for this technology to replace the human in the context of learning disability provision is enormous. And menacing. Social interaction (in a diverse range of forms) is central to being human. Removing that from an already socially impoverished group has terrible implications.

I can’t help seeing a future where people reside in the community with empty lives, increasingly monitored by technology. With cost as the central motivation for stripping away their humanity even further.

Anyone know when person centred dropped off the table?

This is what everyday life looks like for many people. How have we got it so wrong?