Moments

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.

10 years or so ago I was on the slow train home from a long meeting in Whitstable. A mate rang to say Fran’s son J had been sectioned and admitted to a unit in East Anglia. Around 140 miles away. He was 16. I remember crying on that train. Through horror and devastation. Connor…mydaftlife.com

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.