Worlds are colliding as Chunky Stan has developed mouth/breath/forehead smells that, close up, are kind of revolting but which I find oddly comforting. A strange mix of delicious and foul. I wonder if you’re tossed into a space of grief, preventable death, no accountability and regular demonstrations of beyond shite actions by public bodies you grew up relying on/taking for granted, your sense of smell is compromised. Making Stan’s smell strangely fragrant.

Years ago, on a random, overland truck trip organised through a Time Out ad, detailed in early, carefree [sob] pages of this blog, I went to a tannery in Morocco. The smell was seriously rank. A group of US tourists there at the same time had their faces permanently stuffed into handfuls of greenery. Creating a mint balaclava type effect.

It seems like many people/organisations involved/implicated in what happened to LB (Nico Reed, Stephanie Bincliffe, Lisa, Thomas Rawnsley and countless others…) continue to stuff bunches of greenery in their faces. Trying to erase/avoid/ignore/dilute the stench that rises from everything we’re shining a spotlight on.

At the same time, many people/organisations are smelling the smells with us. With collective joyousness and celebration. This is bloody brilliant.

I don’t know how we’ll negotiate the stench of what’s happened and what lies ahead. During #107days (Year 2) we’re anticipating the outcome of various investigations. I’m not optimistic to be honest. Optimistic for what? LB died a preventable death. We all know that.  A report clearly stating this was published over a year ago. Nothing has happened in response.

I suppose I’ll keep hugging Stan, embrace his smelly smells and hope that those involved/implicated chuck their (pointless) mint bouquets in the nearest bin and do the right thing.

I took the JusticeforLB quilt (or people’s artwork) to the People’s History Museum in Manchester today. An outing like no other. It’s going to be on exhibition there from 1-22 April.

Quilt responsibility is a pretty big gig.

I set off with a good dose of fear this morning. This ain’t a bad thing. Cab to station. Deep breath. Biggest fear was forgetting the quilt. I waited for the train down platform from the typical chunk of passengers in a curiously quiet and peaceful spot in the sunshine. Nearly missing the train by absorption in our response to the Public Administration Select Committee stuff around NHS safety stuff. I got on board, timed the electronic doors to perfection and was allowed to sit in first class. Cross Country trains deserve a big shout out for this.

I was able to get a shedload (haha) of work done with the quilt safely above me and no (apparent) quilt peril opportunities for three hours. Malcolm, offering various treats over that time, gave me a cup of coffee and piece of cake and we got chatting. Turned out he used to work as an agency support worker at a learning disability unit. They had a staff ratio of 2 nurses/ 2 support workers to around 25 patients.

“Five patients and four staff? I don’t understand it. NHS? I think the NHS is great, don’t get me wrong, but… four staff and five patients?”

We said goodbye at Manchester and I went to get some cash out. With some giggling, the woman behind me held the quilt while I got my wallet out.

“Am I going to end up on one of those TV shows?” she laughed, balancing it carefully across her arms.

A station cleaner joined in asking what the quilt was. He too was as shocked as Malcolm when I told him.

“When I think about what people moan about…” he said. Shaking his head. “I mean I moan about money. But this…”

He took a postcard to show his wife.

At the museum I was taken down to the quarantine room. The person I was supposed to meet was in another part of Manchester because of a flood.

“A flood?” Gulp.

I left the quilt in the quarantine room after serious protestations of quilt care and carefully tucking the quilt smarts provided by Janet Read, chief quilter, on a memory stick with a lovely large Paddington Bear style luggage label inside the plastic covering.  I met various staff members in a place that just exudes people’s history. This is such a good venue for LB. Stan has always been ‘dog of the people’ and LB a history hound.

Just before I left there was mention of freezing the quilt.  Freezing? Oh boy. [Sorry Janet]. Frozen and freezing kept bouncing around my frazzled mind, including the Frozen cinema showing organised by Yellow Submarine tomorrow and our half arsed watching of Fortitude.

More reassurance from cheeky chappy guide on the way back upstairs. Frozen schmozen. Freezing is common museum practice. He asked me about the quilt.

“Wow.” He said. Visibly shocked. “That’s just shoddy.”

I headed back to the station. Then realised I lost my wallet. Eurgh. I retraced my steps and found it on what looks like the freezer in the quarantine room.

On the train back, later, I bumped into Malcolm again.

“Good luck with your case”, said he said, “I’ll look out for it”.

Day 6 of #107days again. Though we’re not really counting the individual days this time. That was last years extravaganza. And we would never want, or even hope really, to recreate such a spontaneous, unscripted, joyous and collective celebration. Taking awesome to new levels.

I couldn’t look back at what I’d written much about LB’s time in the unit this time last year. Even though we’d vaguely talked about filling #107days with these posts (we had no idea it would become such a phenomenon that we’d be splitting days between two or three people/organisations by the end.) Today I revisited the Day 6 post. Not sure how to describe what it feels to read such naive, misplaced optimism knowing what we now know.

Baseline assessment? Get LB active again? I had no idea that I was in the process of writing an account starkly capturing the continuing shiteness of provision for learning disabled people, despite the Winterbourne View meithering, at the time.  What I heard that day was a reiteration of how the unit had been described to us a few days earlier. A place in which patients are assessed, ‘treated’, while being encouraged to lead their everyday lives from the unit. School + ‘baseline assessments’ sounded bloody brilliant in the circumstances.

A sunshine and daffodil day.

The daffs are out again. Some things don’t change. And the magic of #107days bubbles below the surface. Thank fuck. We’re asking people to let us know what being involved in the campaign (in whatever way) has meant to them. Early responses have already brought tears, laughter and cheer to the Justice Shed. An antidote to the relentless justice path we’re tramping. Thank you.

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.