And we’ve announced that the Justice quilt will be exhibited at the People’s History Museum in Manchester from 1-22nd April 2015. This is so unbelievably fab that we almost can’t believe it in the Justice shed. Chunky Stan has always been ‘Stan, dog of the people’ and LB had such a love of history that, along with the Rodgers school buses, the Earthline Scania heavy haulage trucks, the police involvement and his rocking legal team, the pieces could not fit together better for the quirky young dude with a smile that lit up the universe.
Tomorrow we have a meeting with the Mazars who have been commissioned by NHS England to undertake the review into all deaths in Sloven mental health and learning disability provision since 2011.
It’s probably worth flagging up some of the CIPOLD findings because they are so off the scale shocking. On average learning disabled women die 20 years sooner, and men 13 years sooner, than the general population. 22% of the sample were under 50 when they died.
Astonishing statistics. And then this:
Despite 43% of the deaths being unexpected, they were nearly 10% less likely to be reported to the coroner. Wow. Howl.
A bit of historical context
I suppose it ain’t rocket science to work out why learning disabled people die earlier or why their deaths seem to be of less consequence than the deaths of others. In 1952, A.F.Tredgold wrote this in his cheerily named Handbook of MentalDeficiency only a few years after the end of WW2;
(Taken from David Race’s Learning Disability – A Social Approach.)
Forty years earlier, University College London set up a Laboratory of National Eugenics part funded by Francis Galton. Galton, who coined the term eugenics, wasn’t alone in his concern about the ‘feebleminded’ breeding like rabbits and decimating national fitness. A genuine fear of gene pool dilution (Wellcome have a fab digi-archive of The Eugenics Society documents which are kind of breathtaking). It was an influential movement for some time (and arguably still is, albeit less explicitly with that pesky term carefully hidden behind layers of more ‘acceptable’ language) involving a range of public figures including Beatrice and Sidney Webb, HG Wells, William Beveridge, George Bernard Shaw and John Maynard Keynes.
We’ve never really moved beyond this perception of learning disabled people as deficient, worthless, burdensome and a problem. Despite a steady stream of policy making and legislative change. It doesn’t matter that there are small pockets of brilliance dotted about the country if most learning disabled people lead constrained, contained and impoverished lives. Waiting for an inevitably premature death. With little accountability. And no imagined future.
So. A meeting tomorrow with the Mazars. Maybe another step forwards in making visible (unconscious?) practices that demonstrate the dismissal of some lives as relevant or human.
Seems wrong to end this last week with a rant (see previous post) so will do a quick summary of what was, considering all things, a pretty fab week. Monday was LB’s 20th birthday. Hoping that life won’t become a series of ticking off his birth day in a desperately desperate way, we managed to pull it out of the bag accidentally. The kids (and Jack, Rosie’s bf) all pitched up for a nosh up on Sunday. I probably bored them shitless with my teary ‘if there’s any day in a year that it would be bloody cool to see you all it’s LB’s birthday’ ramblings. We also got to hang out with the cutest little kids on the block in the afternoon.
On LB’s birthday, Rosie, Owen and I went to see the remaining poppies at the Tower of London.
You can’t really call things like what to do on your dead child’s birthday (sorry). It’s so unknown and beyond distressing but, like last year, this was a cracking choice.
LB loved the Tower of London. It was the scene of one of his most memorable birthday outings and the poppies were gravely moving and powerful. A strangely comforting setting.
We had a good time. The sun came out. And it was lovely to see Rosie and Owen bantering about. We recreated the iconic photo from that day. Then piled into the gift shop to buy bus stuff. We got Rich a bus tie to wear to the inquest (a grower, hopefully) and a brilliant London bus decoration (to be unveiled during the #justiceforLB advent calendar).
Friday, another trip to London for more #LBBill chat with Disabled People’s Organisations. We kind of expected, and were prepared for, some challenge about our motivations and actions. As it was, we were just a bunch of people, all wanting similar things, discussing what these things were and how to make them happen. Supported by crowdsourced drops of brilliance.
Nearly 16 months now since LB died. 16 long months. Nothing’s happened really in terms of change or accountability. The preventable death of a fit and healthy young man in the ‘care’ of the state. In an NHS unit. In the UK. In the 21st century. A young man who was victim of a system that simply doesn’t recognise learning disabled people as human. Can you imagine?
LB’s death has crushed our lives. The damage caused by 16 months of fighting, campaigning and raging is unknown yet. But given I feel pretty shit on a daily basis, probably substantial. Standing up to an NHS trust that bullies, deceives and demonstrates complete disrespect/disregard for us, is pretty relentless. The Sloves throw money at reputation repair and focus on protecting staff (a selective protection given a staff comment here). The experience, for us (an irrelevant, irkesome family), is the equivalent of a daily battering. An experience documented by other parents like James Titcombe, Anne Dixon, Rosi Reed and siblings like @waketheworld. How can this be?
So where are we at? In no particular order, as always:
One staff member so far is being investigated by their professional body after a referral we made. Sloven staff disciplinary proceedings are like a stuck record; continually finishing in the ‘next few weeks’ or ‘ongoing’. Shameful, shameful delay and prevarication. The Verita report makes clear individual staff failings. It should not have been our responsibility to do this.
The second review into LB’s death, covering transition, mental capacity, restraint, why he went into the unit and broader governance issues, is underway by Verita. Due to be completed early next year.
The Slade House site is shut to patients. A problematic silence about what will happen to this prime chunk of land continues. And what is happening to people who would have been admitted to the units there. Nothing like allegedly sweeping in to take over known problematic provision in a different county, allowing it to worsen (till something serious happens), closing it and flogging the land. Nope. Nothing like it.
On a brighter note… the #LBBill is going at a pace that Sloven should take lessons from (no vimeo in sight). The easy read version of the draft bill is being produced and will be blasted out for discussion in a week or so. Complete energy, commitment and passion.
The LB Fighting Fund total so far, after remarkable efforts is £24, 267.77. Wow. Wow. Just wow. So many people, many of whom we’ve never met and who never met LB, have contributed to this amount. Just brilliant.
We’re heartened by the remarkable solidarity #justiceforLB demonstrates. We ain’t got a vimeo budget but there are countless people willing to step up and do all sorts at the drop of a hat.
We’re also fucking delighted that our quirky dude, who loved buses and laughter, seems to have touched, and even impacted on, people’s lives. What a legend.
Had a crap day on Sunday, flung back into a space in which I couldn’t quite believe that LB died [he died?] the way he did. I think about him pretty much every waking moment but the way in which he died is (necessarily) pushed to the margins most of the time.
Later this afternoon I’ve got a call ‘booked’ with the Sloven Board Chair, Simon Waugh, to discuss the answers he eventually sent in response to our questions around Sloven actions to LB’s death. These answers pretty much say nothing. Other than ‘Er, it wasn’t us guv’ or ‘It was the non clinical staff’.
I don’t want to talk to him. Like I don’t want to chase up the Central Southern NHS Commissioning Support Unit to ask why 6 months of records were missing from my access to record request last week. Like I don’t want to lug a case full of beyond ridiculously Sloven redacted text to an information specialist*. Like I don’t want to read document after document detailing unspeakable ‘provision’ in Oxfordshire with a forensic eye*. Like I don’t want to wait years for any accountability or justice for something that was just off the scale of fucking wrong and we all know it.
I don’t understand (and this is what dominated Sunday) how a young, isolated (in spite of having a full on loving family) person, who was fit and healthy, could die a preventable and beyond imaginable death. By anyone’s standards. In a publicly funded organisation. A heavily staffed apparently specialist NHS unit. [Just add whatever into this space. There are no words. Nothing we can grasp, real, imagined or otherwise. Just a situation of horror and utter despair.]
Katharine Chrome (the wonderful Who by fire blogger and one of the legendary band of forensic shite analysts), tweeted earlier that an old post of mine that re-surfaced at the weekend reminded her of the time when this blog was about fun and photies. Blimey. Yep. It was. And a celebration of quirky family life.
Constantly snapping pics is one of the many things that has stopped for me. Like having a bath. Smiling at strangers. Reading a daily newspaper. Being wildly optimistic. Feeling content or relaxed. The rippling consequences of experiencing such a catastrophic event (and the full weight of a bullying NHS Trust for over a year now).
I hope that the fun and photies will return at some point. #justiceforLB has been a breath of fresh air really. A complete tonic in the face of such shite. If this astonishing, unprecedented, collective force of dedicated, committed, loving, full on, spontaneous, irreverent, thoughtful, creative, artistic, informed, hilarious, energetic, dogged, expert, generous, completely voluntary, skilful, diverse, different and rule breaking embracing gaggle of awesomeness, can’t generate meaningful change, then it really is time to give up.
So, here’s to this afternoon. The next stop on the Sloven slow train of prevarication and dirty tricks. And a cheeky number suggested by Matthew Smith.
*There has been some legendary, behind the scenes work, examining what appears once these hefty stones are lifted.
The charity shop (can’t remember which one) collected LB’s belongings (the outer layer) this morning. A close encounters type mound of black bin bags and boxes of stuff heaped up in the front garden.
It was more painful than I thought it would be, given this ‘stuff’ had all been in bags for pretty much 15 months now. Pulling his well worn camouflage jacket out of one gaping bin bag, I went back inside and let Rich deal with the social niceties with Shane and his white van.
“Thanks for the donation! Much appreciated!” I heard the cheery call and slam of the van door a short while later.
My brain kind of bounced round in some kind of indescribable space while the bits left of my heart took a further pounding. Dust swirls. The pain almost too familiar now.
Within moments of Rich shutting the front door, the post arrived. A letter from Knoxville, Tennessee.
It was the Disability Studies Conference at Lancaster University this week and LB featured pretty centrally. I gave my first presentation at the inaugural conference back in 2003 when I was a PhD pup. And LB was a bouncy 8 year old still wearing his ELC police tabard and orange binoculars.
LB’s bus picture featured on the conference signs/abstract book, delegates were given LB Justice quilt postcards and the quilt itself was officially launched (the story of the quilt can be read here).
Jack’s mum, Gina, brought some more of Jack’s cats to sell for the fund and he raised over £100. All material used in making the cats is recycled other than the felt.
There were also LB notebooks made by our lovely neighbour, Ruth, which went down a treat.
It was a dynamic, energetic, creative and emotional space. I know it always has been a cracking conference but the unfailing commitment/action of Hannah Morgan to create this focus on LB/the campaign and weave (sorry) it into the texture of the event was exceptional.
A full on first day back at work on tuesday. Back to back meetings. A bit of nipping back and forth from the office to the train station in late summer sunshine. I was beetling back there later in the afternoon to meet Janet Read who was bringing LB’s justice quilt. On the way I had a message to ring the Coroner’s office…
The quilt.
Wow. Wow.
How to describe LB’s justice quilt/The People’s Art Work?
Impossible to coherently comment on such an explosion of * action * thought * love * creativity * skill * artisanship * activism * artistry * celebration * collectivity * humour * brilliance * colour * feeling * commentary * commitment * resistance * buses * determination * delight * wonder * optimism * life * LB * Dudes *
It’s just extraordinary. A sneaky peek at two sections:
…. …. Wow.
Deep, intense richness. Resistance, empowerment, action, solidarity. Things that should be. Things that should never, ever, be. I don’t know. It’s off the scale of brilliance.
The quilters – Janet Read, Janis Firminger, Margaret Taylor and Jean Draper – are stitching legends. So much thoughtfulness, skill, creativity, work, dedication and commitment (and I hope fun) contributing to the production of this unforgettably beautiful artwork. It completely captures the random, chaotic, beyond unwanted, ‘stitched in the moment’ social movement that has emerged in response to LB’s death.
Thanks to everyone who produced a patch, from tots to Mrs S in her eighties. My lovely niece Ally Rogers deserves special mention for her memories of her quirky and beyond loved cousin.
mydaftlife 