The National Audit Office yesterday reported an unacceptable fail on the part of ‘The Department’, NHS England (and the 51 organisations who signed up to the Concordat back in the day) to move people out of ATUs.

We published our own audit from the Justice Shed on the same day. Makes for an interesting read.

And Newsnight came round. And did a cracking job.

LB made national TV 20 months after drowning in a bath in hospital. Astonishing.

Oh dear. Some despondency reached the Justice Shed today. There were a few twitter threads of discussion around the fact that no disabled people were on the #LBBill panel at the Humanities gig at Manchester University.

Nope. There weren’t. Should there have been? Good question.

#JusticeforLB and the #LBBill have been organic, unscripted, slightly disorganised campaigns. Everyone involved is a volunteer. There’s no structure, no resources (other than goodwill which has been available by the shedload) and no agenda (other than effective change). Most importantly perhaps there are no vested interests.

Many #JusticeforLB campaigners are disabled. People have contributed in all sorts of ways. An open and transparent campaign. Anything and everything goes (just browse #107days to delight in this). A mix of determination, commitment, passion, humour, fear and fearlessness, and a refusal to be drawn into meaningless, empty and fake talk about what is about to change. The amount of hours and (crowd sourced) skills and support provided for free impossible to count.

This is in contrast to the spectacular failure of other efforts to make life better for learning disabled people. The National Audit Office are publishing their investigation into the ‘dread to think’ sums of money squandered on the Winterbourne View Joint (Non) Improvement Programme on Wednesday. This should make for an interesting – finger nails on the blackboard – type read. Big charities and other organisations have also talked the talk at length, across the last three or four years, within the stifling constraints of existing structures, organisational layers, an eye on salaries and the awkward position of being both campaigner and provider. Tripping over in jargon alley, distanced from the experiences and engagement of learning disabled people and their families, apart from the often tokenistic involvement of one or two disabled people, hands over ears to avoid properly listening.

So should there have been a disabled person on the panel on Monday? Of course there should. We’ve met with disabled people’s organisations. Cracking easy read bill resources are available. There have been events organised across the country focused on getting feedback from learning disabled people. Passion, commitment and effort have generated a mountain of feedback waiting to be analysed and fed into the next version of the Bill.

That the panel didn’t include a disabled person shouldn’t be a negative reflection on the campaign. It should raise questions, discussion and reflection on how meaningful involvement can happen within the context of no resources, little time (or structured organisation?) and an antipathy to tokenism. And what this means about ‘inclusion’ more generally.

As well as a shared commitment to making things different.

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:

Too bloody right.