The roadshow

Bit of a #justiceforLB flurry this week with a workshop on Monday afternoon and evening talk at Manchester Met (see Mark Neary and Steve Broach), and a talk/workshop at the NDTi conference the next day. This generated loads of positive stuff which is ace. Meeting up with fellow justice campaigners ‘in real life’ is fab and hearing how the campaign is energising, moving, challenging and clearly being a collective pain in the arse, is heartening.

It’s pretty hard, odd, awkward, I don’t know, just off the page of sad really, publicly talking about your child who has died. Especially (I’m guessing) when her or his death just screams wrong on so many levels. On Monday and Tuesday I showed a slightly edited version of the film Rosie and I made in the days after LB died, for his do. I remember us sitting at the kitchen table in the early hours (because there were no day and night rules in that nothing (but hellish) space between death and burial/cremation), going through photos and home movies and stuff that captured LB. [Howl]. We paid meticulous detail to the content and arrangement of the short film. The magical part of Pure Imagination had to fit with the pic of LB being showered in confetti at a friend’s wedding, for example. A detail lost on others I’m sure (understandably), but of crucial importance to us in our tear sodden, bewildered and devastated states.

I dug out this film this week because I kind of feel that who LB is has shifted. He’s gained notoriety. (A bloody hard fought one, mind). And in death, everything he would have wanted in life – buses and a truck named after him, a collective focus on buses and Eddie Stobart, a top notch legal team fighting his corner, a police investigation – has been achieved. He only needs Emma Watson to champion #justiceforLB and all boxes would be ticked.

Stripping all that back. He was a dude. A six form student with his adult life (though you can fuck right off with this adulthood at 12.01am on the 18th year of your birth rubbish) ahead of him. That he died after 18 years of barely getting a scratch (love him) at home, in ‘specialist provision’ that cost £3,500 per week (£14,000 per month???) with a staff to patient ratio of 4:5 is incomprehensible still. I’m not sure we’ll ever make sense of it.

But the campaign is keeping LB alive in a kind of cheesy old way. I suppose that’s why it’s a fairly typical response by families. And we seem to be getting somewhere. Almost.

As Stevie B says:

image

Too bloody right.

3 thoughts on “The roadshow

  1. Sadly, if the Bill does nothing about the vague definition of ‘capacity’, in the Mental Capacity Act, and that the LA assessors are not regulated, paid by LA, and therefore, have a huge conflict of interest in assessing the autistic as incapable, when the LA providers benefit so much by that assessment..

    And/or remove autistics, from this totally subjective, vague, inappropriate capacity definition.

    And remove the scandal of independent away from family living, and reign in the all powerful profit hungry LAs.

    The Bill will be little more, than a useful sinecure.

    It appears from the drafting to serve the government purpose of removing autistics from the MHA, but not the MCA, which is far more draconian.

    This will then remove autistics from the NHS hospitals, where they are, in any event, being detained indefinitely illegally, so we do not need to change the law, merely enforce existing law.

    To other corporate provision under the MCA, which can then claim a similar weekly figure of 4,000 ( all benefits-DLA, HB, up to 82,000 under Chronically Sick and disabled Act, NHS care ), and ‘education packages’ till 25, for encagement for life in secret . Families and autistic totally at the mercy of the state and privatised monopoly care.

    All unchecked, unaccountable, and in secret, medication enforced, huge pharma kickbacks, all rubber stamped by Court of Protection.

    I do fear this is the aim, and as usual it is smoke and mirrors.

  2. Pingback: Reflections on reflections | mydaftlife

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