Reminded Connor’s inquest finished 10 years ago tomorrow. I gave evidence yesterday in 2015. I rarely, can barely, bear to think back to those days. Even writing this first sentence fills me with an overwhelming sense of dread. Eased in part by remembering the unwavering support we received from so many people. Family, friends, friends of friends, colleagues, and countless others. The courtroom was full daily with people who cared. Who recognised Connor mattered. He matters. 

Memory tattery. The family room packed with fast food smells, intense ‘strategic’ discussions with our legal counsel held perching on the arms of the massive, dark blue settees or lost in the depth of these beasts where it was hard to know where limbs, bodies, warmth, love started or ended in the strangeness and sadness of that room. Its furnishings, safety and the cruelty of the courtroom a few steps beyond.

Looking back now, we collectively owned the space without recognising it. Not just the nosh wrappers. A bank of integrity, George Julian’s live tweeting at the frontline. Amplifying the unspeakable hostility and defensiveness the NHS leans into when it fails people so blinking badly. Rising above quibbles about tweeting interfering with the court recording devices to let people beyond know what unfolds in these processes.

Love, Nintendo distraction, waiting, exhaustion, so much sadness. Rage. Always rage. Dirty, grubby tricks. And love.

The #JusticeforLB collective standing firm against everything thrown at us. The coroner’s officer Beth checking we were ok, making sure Connor’s photos were prominently displayed. My Life My Choice members attending daily, negotiating the dated courtroom setting and rules, learning to stand (why?) when the coroner entered the room. 

The stuff of barrel scraping conducted by legal counsels was all the more remarkable because the death of someone with learning disabilities rarely led to an inquest hearing. Erasure mechanisms worked seamlessly until the likes of a pesky mother wrote a blog providing contemporaneous records that could not be ignored. Leading to intense efforts to discredit, destroy. Howlers and howlings around me daring to work full time and failing to inform health professionals about the very basics in basic health care.

The work of our legal team, Charlotte Haworth Hird, Caoilfhionn Gallagher KC and Paul Bowen KC meant these efforts landed awkwardly, missed the mark. The jury were sharp, attentive and invested in justice. Their consistent questioning of each witness further highlighted the absurdity of the ‘defence’ of those responsible. 

It’s interesting that what I remember now is what was recorded at the time, words and photos. The big story. While so much else went on. Friends picking up dog walking, cooking, everyday life outside of walking into the Oxfordshire County Council building for two weeks. To listen to the unspeakable.

Now, I wonder how or why so much of what unfolded was allowed to go unchallenged by the coroner. Blame blasts fired without comment. At the time, I was focused on the endpoint. Of getting accountability for Connor’s death. That was what mattered. Answer, obey, don’t rise to provocation.

The proceedings were, with hindsight, grotesque. Two years later, at a GMC hearing run by the MPTS that dragged on for over a year, the brutality of the responsible clinician’s legal counsel cross-examination led to me becoming unwell. This was apparently fine. No one stepped up to say stop it at the time, or after. No one. A letter to the chair of the MPTS about the brutality of the questioning was knocked backed with a ‘tsk tsk, if you dare complain about a medic, you should be prepared to be robustly challenged’ answer.

I live with the experience of gripping a witness box edge to look at a jury and answer questions about my failings as a mother when my beautiful boy was left to drown in a hospital bath. I live with the experience of sitting in a room on the fifth floor of a building on the Oxford Road in Manchester, near where I now work, being told that the responsible clinician was upset by my witness statement about her ‘care’. In front of a GMC panel who after nearly two hours of cross examination didn’t ask if I wanted a break as my world visibly spun out of kilter. 

These processes (still) operate by allowing the brutalisation of bereaved families and protecting (certain) health and social care staff.

How is it possible to sit by and allow this to happen? What the hell do you suspend to allow yourself to simply. not. notice?

And what would it take to wake you from this?

PS. He wasn’t late.

New book is out today which is exciting (terrifying). Full details are here. You can get 20% off with this code 25AFLY2 which is cool.

It’s a grim read. In the preface, the series editors, Antonia Lyons and Kerry Chamberlain write:

This book is at times a distressing read, being ultimately about human rights, who they are and are not afforded to, and who is colluding in human rights abuses. We all – researchers, medical professionals, policymakers, charities and anyone engaged in this field – need to be thinking much more critically about people with learning disabilities and our responsibilities for and towards them, and consider how complicit we are in both disavowing the ordinary aspects of everyday life and other people with learning disabilities.

I spent a year reading research and writing about people with learning disabilities and concluded a whole swathe of people are involved in these entrenched failings, either wilfully or ignorantly. Until this group wake up to this and act, people will continue to die years earlier than their non-disabled peers.

The book is dense with references so I’ve produced a summary which is more accessible. Many thanks to those who fed back on earlier drafts of this. It is a nifty document that should be shared with all those I mention in the previous paragraph.

Ooof. Almost here. There. The first preview of Laughing Boy is tomorrow. Updates about production progress and the sharing of gems of film and music magic projections continue. A family whatsapp jibber ujabber earlier sparked a playlist of Connor’s favourite songs for when audience members take their seats. Another tumble into joyful memories. The bus trip from Oxford tomorrow afternoon will include Connor’s favourite sarnies; cheese and pickle and sandwich spread [don’t judge]. Among the audience will be Connor’s babysitter Izzy, and two of his teaching assistants Sue and Jude, as well as family, friends and campaigners. Funny exchanges with the theatre box office as Penny Horner cheerfully juggles our chaotic ticket sales, returns and more. The #JusticeforLB quilt will be on display at St James’s, Piccadilly for the next five weeks.

I still blink in awe at the insights this gig offers. It seems like the (cosy?) 4 weeks in the rehearsal room has a ritual ‘ending’ (last Saturday) when a van picks up traces/props and moves the team to the theatre for the final few days of rehearsals. The set designer, video creative, composer and music designer move in with tech gear and spend 12 hour days working, with the cast in out in out, costumes on and shake it all about, to a final dress rehearsal tomorrow afternoon. Wincingly sharp timelines seem to be calmly absorbed by everyone.

Work. Expertise, absorption, creativity. Commitment.

Media coverage has continued with thoughtful contributions from John Harris in the Guardian and Victoria McDonald on Channel 4 News. Re-watching the Sloven director being carefully questioned by Victoria McDonald in a news clip from the end of Connor’s inquest was quite something. Nearly nine years on it offers brutal clarity around the absurdity and ignorance of those involved who should have known better and done better.

This coverage led to several people getting in touch. People who have experienced ‘similar’ failings, old friends, acquaintances and colleagues, names and faces from the distant past before life took a turn. People involved in the campaign. A warm wash of well wishes. [Thank you.]

The play is, as Steve Unwin has consistently said, political. It highlights wider systemic failings that should be the making of scandal and action. Over and over again. Following on from The Lonely Londoners, the play will, through its writing, direction, design and execution make audiences (and those involved in the production) take notice, think and question. As we all should.

Right now though, I’m thinking about this…

The first play preview night is a week today. Not been back to the rehearsal room for practical reasons, so I’ve been absorbing rehearsal reports from stage manager, Daisy Francis-Bryden, updates from Steve Unwin and messages from the cast/creative team (language/terms are now well bedded in.)

No props originally, there are now mobile phones. Daisy shared a photo of this development; ‘I hope this brings you joy the way it did me.’ [It did.]

And a bus. Discussed in many a rehearsal report. The size, colour, tone, finish. Where it will be on stage. (On the floor, no shelf needed.)

Alfie shared this photo earlier.

Just love.

Last night, Jermyn Street Theatre shared an eight page visual story info document to help people find the theatre, have some idea of the layout and other important stuff.

A document that demonstrates more thought and care than Connor received from many health and social care professionals. In a work meeting earlier, we puzzled over the why (how) of this. Why (how) is this level of thought, sense and attention so often absent, and yet clearly doable in this space? [In a week in which George Julian is reporting the inquests of Marcus Hanlin and Fern Foster, and Dawn Cavanagh and allies organised a #StolenLives protest outside the Senedd, Cardiff.]

Matt Powell, video designer and Holly Kahn, composer and music designer have created a piece of brilliance packed into 75 seconds of film capturing #107DaysOfAction. An intermezzo. I watch it and rewatch it, wondering how this magic is possible, how the hell we pulled it off, and what an extraordinary cast this play draws upon. Literally hundreds of people.

There’s a section about the play with pieces by Saba Salman, Ramandeep Kaur, Steve Unwin, George and me in the latest edition of Byline Times. And other media stuff brewing. Oh, and a book of the script is in preparation. A playtext.

I’m quietly confident it will be a smasher of a play. Setting aside the extraordinary brilliance, commitment and experience of the cast/creative team, I know in practical terms Jermyn Street team thoughtfulness has already helped people. There’s been a shuffling of tickets and attendance behind the scenes. Becca has her (funeral) clipboard back out to organise a bus from Oxford and a large chunk of those in the play will be in the audience on that opening night.

It is really quite something.

Approaching the end of Week 3 of rehearsals. The first (preview) night is two weeks today. It feels surreal writing these words. Enormous, unfamiliar, extraordinary, sad.

Documenting random stuff is probably easier than trying to make sense of it.

The script. A whole new world of different folders/formats. How do you physically hold the myriad pages of scribbled over text that will dominate your working life for the next few weeks or months? Ring binders, folio type holders, free style and held together pretty much with a ring tag. Script pages were the glue the two days I was in the rehearsal room in Week 1. My copy was held together with the same metal slider gizmo my dad used to make our homemade childhood holiday scrapbooks (pale grey textured soft card cover, a mix of plain and lined paper with dividers for each day). My over zealous page seeking in the script editing sessions soon dented the flat slide mechanism and I tumbled back into a holiday cottage in the Yorkshire Dales, carefully detailing in giant letters what I’d eaten/done that day.

Scampi And Chips. Ice cream. Sweets. Bed.

Work on the script is an exemplar in collaboration. Everyone in the room involved in poring over a bumpy line, thinking about meaning, language, context and how it may be understood by the audience. Is it even necessary? Cut.

Beautifully forensic scrutiny.

The people. It’s hard to describe the atmosphere of the Rehearsal Room. There’s a cast of seven actors, the director, two associate directors, video, set and music designers, stage manager and more. The first morning there I answered a series of cheerful and curious questions with laborious answers that I’d forgotten were all in the script. I literally recounted the script to a room of quiet respectfulness.

Then there was a read through of the script. Sitting on chairs and acting, not reading. Eh? Where did that come from? My ignorance was hitting the high ceiling of the room, trying to bounce into the Lion King rehearsal next door while I sat tight. And listened.

It’s off the scale of weird to watch your life being played by a group of people you’ve just met. That they are such a likeable, sensitive, committed, thoughtful and laugh out loud funny bunch was something else. Connor palpably mattered in that room.

The next day. Owen and Tom came along. They had plans to graze record shops after dipping into the rehearsal for a couple of hours. Mid afternoon, after more script revisions, a full read through of the script and lunch, they were also cheerfully and curiously questioned about their childhood, Connor, and what happened. The cast sat around on chairs, laying or sitting on the floor while Owen and Tom chatted about funny and joyous memories, moments. And more. The quiet respectfulness I’d experienced the day before was energised with laughter, life and stories. Stories that sat outside of the script. Life from a sibling perspective.

Now. I get daily rehearsal reports I’m going to miss. Glimpses of the magic of play production and development, hints of the brilliance, the labour, the love and the care. The opening night is too enormous to think about. The production is a joy.

Further info and tickets https://www.jermynstreettheatre.co.uk/show/laughing-boy/

https://www.theatreroyal.org.uk/events/laughing-boy/