Two things tonight. Two that are uppermost on my mind (outside of ‘normal life’). I’ll park the friend who asked for her son (in independent supported living with a package funded at around £2000 per week) to be taken to the cinema a year ago. He still ain’t been. And the friend with a son in independent supported living (whose neighbours repeatedly campaign against his, and his housemates, right to live in the community).
First. Treating learning disabled young people as “adults” once they turn 18. Well this is a complete fuck up approach in my book. And don’t switch off, you doubters, you. I ain’t suggesting that learning disabled people should be treated as “children”. Instead, can we get over our fixation with distinctions that relate to “time” which is, itself, pretty arbitrary? Er, midnight on the 28/10/13, a “child”. A second later, an “adult”. Nonsense. For anyone really, but there are serious and potentially damaging implications for those who don’t conform to expected ways of being and doing.
This is underlined by inconsistency across services and space. In some areas/settings, “children’s services” include learning disabled young people up to 25. A more benign, family friendly (though not necessarily ‘good’) space. In others, the cut off happens at 18. Eh? What does this mean? Who makes these judgements about what constitutes “adulthood” for learning disabled people? And why such inconsistency? Once an “adult” it’s easier to obstruct family involvement, of course. LB was treated as an “adult” by health and social care. A terrible, terrible, catastrophic judgement.
Second. Various little birds have told me…
[Eh? Little birds? Wha?
When we were kids, we lived in Southend. Southend carnival procession was a huge annual event. I remember as a kind of tiny, going to the sweet shop round the corner on the morning of the carnival. The owner, bashing toffee slabs with a hammer to put in paper bags for us, said “A little bird told me you’re off to the carnival”. I was mesmerised by his magical ability to know this….]
… that another young dude died nearby, unexpectedly, in the (non) care of the same Trust. Eh? Wha? Really??? So, so wrong.
These birds are fairly substantial. In terms of detail/evidence. Maybe more so than the sweet shop owner. Less magical and more evidence based (although I prefer the former). So it turns out that, at the same time we were experiencing the harrowing, skullduggery actions of the Trust, a second family were further along the hellhole process of internal review and inquest. Again, with no genuine reflection on practice.
A second young dude died barely ten miles from here. In a similar time frame. And the Trust pulled the stunt they pulled with us last week…
Duplicity? Stupidity? Arrogance? Denial of the efficacy of the little bird network? How can this be? So, so difficult to make sense of. So hard to engage with on a rational level. Well, there is no rationality really. Our understanding of anything was smashed by LB’s death.
Did I really just type that? There are no words to capture this experience. No resources to engage with such blatant inhumanity. The system is rotten.
In a strange coincidence (not) a review was published today highlighting failures in the NHS complaints process. Good. But worth pointing out we’re not ‘complaining’ about NHS actions. We tried that back in March/April in a vacuous, pointless exercise. We’re focusing on the abusive, exploitative, bullying and careless treatment of learning disabled people. On systemic disregard and indifference. On the breaching of the right of learning disabled people to be – to go to the cinema, or live in the community – and their families to be with them.
And, in LB’s case, his right to life.