‘Did anything strange or startling happen?’

Another smorgasbord of conversations, chat and happenings over the last few weeks. Leaving me puzzling. Mostly about anger and silencing.

As ever, strands of love, rage, activism, academia, despair and some shite.

A project meeting earlier. Our @OlderAhead project is more than needed. We knew this, the first chunk of work has generated evidence to support it. The lives of older people with learning disabilities and family carers are largely ignored in existing research. A family carer co-applicant, and architect of the Embolden project which directly led to this study, pointed out – slightly tongue in cheek – that the funder should be pleased. Yes. [No.]

I was reminded during the meeting how our dad would come home from work every evening when we were pups and ask ‘Did anything strange or startling happen?’ It never did. Or we simply didn’t recognise if it had. Coated in love, comfort and cosiness.

A Zoom catch up later with friends. Conversation turned unexpectedly from open justice to obedience. And rule breaking.

I’m too obedient.’ ‘No you’re not, you’re a rule breaker.’ ‘No I’m not!’ ‘Yes you are, you’re always breaking rules!

I chuckled watching this exchange. And puzzled. I don’t think it is about breaking rules, as these rules are rarely written or even articulated. It’s about being bold. Forthright, direct. Uncompromising. Characteristics too often punished and punishable. Especially in women. The loose repackaging of acts as ‘not being nice’. And the silencing that comes with this repackaging.

An old blog post was randomly retweeted during the call. ‘Revisiting Tits and Trolls’. [I dunno, it’s woven through social scientists to ‘revisit’ stuff. Reflect. Agonise. Be curious. Did anything strange or startling happen?] Back in early 2012 I wrote “The trouble is, blocking ‘trolls’ (i.e., people who disagree with you) will lead to twitter becoming a tedious, turgid space where you’re surrounded by similar others, with your views and values protected as kind of cosily superior and untouchable.” Indeedy. Another form of silencing.

A formal complaint about my tweeting was made to my employer a few days before Christmas. A senior academic said I was bringing ‘Oxford University into disrepute’. Quite the allegation. Demonstrating more apparent upset with my tweets about their work than the torture and abuse they were reviewing.

I keep thinking about how angry we should be – as academics, as human rights experts, as journalists, as people – about the abuses we witness? Anger is an appropriate response. How could we not be angry about this stuff?

Yesterday, Bindmans shared news of urgent judicial review proceedings around the appalling situation of a young autistic man with learning disabilities. This isn’t news to many of us and A and his family are not alone in this barbaric situation. And yet this is apparently acceptable. The silence of those professionally involved (across years now) is quite something. A silence that can only act to further silence. How is this enabled or allowed?

During a recent Young Legal Aid Lawyers panel ‘Holding the state to account after a death’, co-panelist and barrister Mira Hammad passionately argued for greater collaboration with activists. She described how much of the training of solicitors and barristers involves learning to be ‘obedient’ [my interpretation]. On Thursday, at an open justice event ‘Does being watched change how justice is done?’ discussion focused on the importance of witnessing and amplifying the content and processes of court hearings. We talked about the micro-violences families experience in court as well oiled barristers defend the state using well worn and often nasty tactics. [I use the term micro-violences here not to diminish the impact of these actions on families, instead to convey how these are often treated as acceptable by the coroner, judge or magistrate.] Louise Tickle who organised the event said this harm underpins why she does the work she does.

I started writing this blog in 2011 as a fun project, naively optimistic about Connor’s future. It has developed into a space bursting with strange and startling. In the last decade we’ve learned, viciously experienced (and documented) how appallingly people with learning disabilities are often treated, how the state response to the death (or serious harm) of marginalised people is often brutal and how many senior, influential people are prepared to talk the talk with zero intention of walking anywhere. We know there is little or no consideration around those people with learning disabilities who live to an older age and little thought around the trauma people absorb across their lifetimes because of the paucity of effective support and a chilling void of imagination. Humanity stripped back to bone and pervading rottenness.

The various means of silencing, big, small, deliberate, incidental which include blocking, censoring, complaining, courtroom tactics, gaslighting and repeated ignoring or dismissal can be powerful tools. And it’s exhausting being depicted or viewed as troublesome, hostile, toxic etc, etc for daring to be angry.

There is brilliance mind in the form of determined individuals/organisations, driven by a strong sense of social justice, and refusal to accept the unacceptable. People like Mira, and the panel from Thursday which included George Julian, Caoilfhionn Gallagher QC and Nick Wallis (whose epic and dogged expose of the Great Post Office Scandal is worth a listen). My Life My Choice, INQUEST, Justice, Open Democracy

Being angry about injustice, cruelty and worse is important, valid and appropriate. It should concern us, generate engagement and a commitment to both understanding what the anger is about and what we can do to reduce it. Or get shot of it altogether.

Imagine.

Did anything strange or startling happen today?

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.