Early in the new year, Steve Unwin tweeted a photo of him and his son Joey with a short strapline. This gently humorous pop at the largely ignorant (not in a pejorative sense) world, generated a thread of photos of children, young people and adults doing the stuff they love to do. A virtual slide show of brilliance, joy, fun and laughter. The stuff of love. Steve was invited onto the Radio 4 Today programme on Monday morning to talk about Joey and this celebration.
A moment.
The Maple House Management Suite
Last Saturday, a grey and mizzle-drenched day, I walked to Slade House. I took part in Katherine May’s Wintering podcast a few days before Christmas. During a sensitive and perceptive chat she mentioned how it had emerged at Connor’s inquest (2015) that he’d died in the STATT unit at Slade House. Not later at the John Radcliffe Hospital as we’d thought [howl].
I never went back to the unit after Connor died and was oddly reminded, nudged, bothered about this. Thinking about the place and space where he actually died. Simultaneously within and outside of (anything resembling) an NHS hospital and what this might mean. Words that, even as I type them, generate a mix of sadness and incredulity that continues to defy articulation.
I walked past still familiar landmarks; the Londis (now Best-One); Tim’s Kitchen takeaway; the Corner House pub (now closed); the fire station. My legs and heart slowed at times by quiet dread and sadness. I crossed the road at one point to walk in a different direction. Fuck it, I almost thought, I’ll head off somewhere where the pain is lessened. I barely touched the kerb before crossing back.
I recalled brighter (in light) early and later spring evenings, nearly eight years ago. Driving along this road to visit Connor, returning home without him. Half an hour, longer, shorter, later, earlier trips, with and without family and friends. Sometimes hearing about a trip to Londis to buy coke and crisps. Often hearing little. It always depends on who is on duty.
I reached Slade House. The initial monstrosity of depressing, dark brown brick structures, an unfinished car park, patches of scrubland and cultivated grass areas. I walked past the main office block with meeting rooms and offices where Connor as a pup had occasionally been coaxed to attend appointments. Where, less than four weeks before he died, he was finally paraded in front of a room of who or what? [I still don’t understand.]
On the fence at the far side of the car park was bright new signage pointing towards the STATT unit.
The Maple House Management Suite
The Maple House Management Suite.
There was talk of developing a ‘state of the art’ unit at Slade House a few years back when Oxford Health finally took over from Southern Health. A place to support young people with plenty of space and a shell to work with.
A moment. That became the Maple House Management Suite.
Not valuing certain children
In July 2020 I wrote about the precariousness two of Connor’s peers were experiencing because of a lack of local appropriate support.
A has (extraordinarily?) remained in this 136 suite since July. He was given notice just before Christmas that he is being turfed out on January 7. In the five months since July (and the months and years before this) no interim space has been found or created locally for him to live while necessary home improvements (a heightened fence) are carried out. Instead, mediocre/failing units in different parts of the country are under discussion. He has a cracking legal team who are working to stop him being moved miles from home. Again.
As staff turn up at the Maple House Management Suite and wider Slade House site tomorrow, A will be finding out where he will spend the next chunk of his increasingly institutionalised life. It could have been so different.
Another moment of utter failure.
Joey and all our children
What Steve, Joey and everyone who contributed to the twitter thread this week did was express, and make visible, what every parent of a disabled children knows, thinks and feels. Our children, like all our children, are loved off the planet.
The moments captured here are well worn, trodden to death (literally) and brilliant. I’ve run out of time to try and present a polished end to this post. I dread to think what will happen to A tomorrow. At the same time I’m left holding onto the power of the disruptive energy which catapulted our children onto a mainstream, flagship news programme. A reminder of the #JusticeforLB campaign and the making of moments.
mydaftlife 
The appalling state of affairs continues: the earlier post at https://mydaftlife.com/2020/07/30/32935/ is relevant too. Before he left Sloven, the current CEO at Oxford Health, Dr Nick Broughton, told the Portsmouth News:
“At times the trust’s response to families’ understandable concerns added to their distress at an already difficult time. This is completely unacceptable: I am profoundly sorry, and on behalf of the trust I apologise. The trust has made significant changes since the period covered by this [the Pascoe] report. In many cases these changes have been as a direct result of contribution from families and learning from past failings.”
A bereaved mother protested about Dr Broughton taking credit for approvements. As a result, the paper added a paragraph to its web site article, quoting her:
“Dr Broughton had a real opportunity to resolve over cases but for whatever reason chose another route. His distancing himself from the Trust’s failures to investigate is offensive.”
It also begs questions about the talk of developing a ‘state of the art’ unit at Slade House when Oxford Health finally took over from Sloven.
What happened all all the residents that were moved out of Slade House when it was closed down?
(I recall the Guardian reporting it as if it was a good thing.)
What happened to those who were waiting for a place there? What did they do?
Does anyone know?
When your son or daughter becomes anxious and angry, when despite all the efforts of loving parents to support them through their anxieties fail. What then? Desperately tired and broken they reach out to the state for respite and help. Hoping and praying that the experts paid to help will do so. Some health and social authorities step up to the mark and give such help but some do not. How when the crisis hits us do we know whether our own authorities will have the experience and integrity to assist and care. Parents are placed in a terrible position where they are between a rock and a hard place.
Many years ago I was invited to speak at a conference on learning disability – ‘care in the community’. The slot before mine was a presentation by a member of a multidisciplinary community team. She talked to a slide – a sociogram on key influences on the team.
I borrowed this slide – and tore up my notes.
There was not one reference on the sociogram to people with learning disability. For my presentation I added a line that hung outside and far below this sociogram – and titled it – ‘people with learning disability’.
Few would deny the increase in LD roles and professions in the last decades can seem an exclusive maze of opaque roles and pyramids of status reinforced and refreshed by an excluding lexicon of words – unconscious institutionalised ‘othering’.
Paradoxically, the steady increase in this army seems to have obscured its purpose. The sociogram today seems to exclude all people – and capture only words like ‘needs’, ‘costs’ and at worst, PROFIT.
We are all in this scalding heat of a deadly pandemic. Families like ours huddle as best we can around a beloved son or daughter; hoping that we can keep them alive till they can be vaccinated. Those with son daughter alone in so called supported living or in an institution – live a daylight nightmare of fear.
The only partner in fear for many families is a brave poorly paid agency worker who is blessed and feared in equal measure – blessed for support – and feared as a potential carrier of a deadly disease.
As Pauline rightly states there is huge variation in our Statutory agencies – LA ‘s in particular. On our sociogram – where are they at present ? To ask this question will ruffle teams of feathers. But at same time statistics on avoidable deaths and too speedy? DNR requests for people with learning disability – are chilling.
Is it a mystery – that there is still so little understanding or valuing of the people that are our children. That so many years of investment in academic brilliance, tons of professional energy and Public cash, has got so misplaced? That so many expensive cogs can appear to spin on – fuelled by common blindness, or incompetence or self interest.
Back in the day, we young mums and dads fought for independence and equal rights for our boys and girls. We wearily battle on. We have put the neglected and broken pieces back together again and again, and we in grief – too often, have had to bury them.
It was always down to us to improve things – from those fragile youthful hope filled years of so long ago .
And It is down to us still – to keep on – driven on – refreshed always by our belief – and our joy; our love and our pride – in our boys and girls.