..we lived by the sea in Southend. High tide, the pier, cockle sheds, pen pals, taking photographs with a kodak camera, and a background soundtrack of the Carpenters, Simon and Garfunkel. And Jacques Loussier, or Jack Brewscheeya as Rich called him, years later when we saw him perform with my mum and dad.
I can remember thinking about growing up a lot as a kid. There was a kind of sky’s the limit type framing to this. And a reasonable grasp of my limitations. I tossed out ‘tennis champ’ (sob) after a couple of humiliating wipe outs at a local summer competition. Artist went when I was disappointedly mediocre in art lessons. Writing? Hmmm. My diary excerpts speak for themselves. But I still had a big old world to dabble in. And mess around with.
I don’t know what LB thought about his future. Other than it featured a beautiful girlfriend and world domination on the ConnorCo front. We never found a way of talking about this properly. Partly because there was no apparent time limit on it. Just banter type stuff. Constrained by the consistent fight/concern about and experience of micro, nonsensical support over the years. Four hours ‘respite’ a month for about ten years. A focus that pushed what mattered to the nether regions. The lack of effective support offered by services a dominating and wearing part of everyday life.
LB didn’t have the luxury I had of options at his age. Of anything really. His ‘adult life’ (all six months of it) was firmly and fiercely mapped and inscribed in terms of indicative budgets, resources and allocations. His potential – artist, entrepreneur, litter picker, caretaker, comedian, model, whatever – was never acknowledged, recognised or even thought about (except by us). And once he kicked out at this non life, it was game over really. The flimsy, poorly resourced, beyond rigid and ignorant world of ‘support’ laid bare.
That he died (he died?) is so raw, so extreme, so I don’t know how to make sense of it. But, at the same time, it focuses attention and underlines how completely shite things for young dudes like him. In 1971, the government published Better Services for the Mentally Handicapped. 43 years later, we are still getting it so wrong for so many.
Astonishing. Heartbreaking. And so fucking unnecessary. Those ‘better services’ have continued to erase all humanity, thought, celebration, aspiration, recognition of skills, abilities, talents and strengths off the board. Leaving a deficit based metal box of jargon, tick boxes and cost cutting. With no real choice or control. Classy.
mydaftlife 
Actually, I think you are rather good at writing and expressing the depressing truth!
Hear hear!
When I first started reading your blog, I was fascinated and drawn in because it reminded me of the combination of fear and hope that comes at “transition”. Services for children are far from great, but there IS support and good people, disabled children are, just about, treated as human. I did fear for the disillusion and shock that comes with finding out just how truly awful “adult services” are. My daughter is in her 30s, and I have had a long time to get used to her status as a non-person. I try not to get used to it, but you do get weary. I hoped you would have the determination, energy, and courage to avoid learning those lessons. The shock and distress of your July post was stunning. What you have gone through since, so terrible! Six months of adult life – how on earth does one “move on” from that? (Katrina Percy, hang your head in shame!)
Independent at 18. Wonderful for some, full of possibility, as you say. But what IS this independence that gets dangled in front of non-persons? Institutionalised neglect and abuse, a farce and a pretence. The Katrinas must be stopped and thwarted, their lethal complacency deconstructed.
I am so, so sorry. LB will never be forgotten. So much more humanity and value than these damned robots.
As one Doctor told me so eloquently once, the world is a cruel place for adults with LD.
I don’t think “the world” is, automatically – a fair number of people have more tolerance and understanding than some “experts” – and people working in care WHO care can, as well. But the insistence on what is called independence is more than a bit of a problem. Pretending that the support of families isn’t a bulwark of independence, instead of severing it because we are a nuisance is what drives me mad.
Two of my daughter’s class mates only lasted six months. Cherished and cared for by their parents and families for 18 years, , one succumbed to epilepsy, the other to a neglected chest infection. This shouldn’t happen, needn’t happen – it ain’t bloody natural causes, but it can be shrugged off that way.