‘People like Connor are still left to die in squalor’: the truth, joy and tragedy behind Laughing Boy

A decade after her autistic son Connor Sparrowhawk died in a specialist NHS facility, Sara Ryan’s campaign to reveal the truth about what happened is coming to the stage.

In a bare rehearsal space near Southwark tube station, south London, 11 people are in the process of forming a circle, ready for a read-through of a new play. On the top of a nearby piano is a small mountain of tea, coffee and biscuits; for two or three minutes, everything is drowned out by the wheezing and groaning of a very loud kettle. The mood is upbeat and energetic; everyone here seems to be happily immersed in the strange magic of turning the script resting on their laps into something full of life.

It is quite a job. The play in question, Laughing Boy, encompasses both everyday joy and the most awful kind of sadness: some of it is about life at its most intense, but its defining event is a senseless and unimaginably tragic death. It also pulls off the rare achievement of being political – at least with a small “p” – but also full of human emotion. The preamble to the script speaks volumes: “It’s a terrible story,” it says, “but it must be performed with optimism, laughter, satire and energy.”

Laughing Boy tells the story of Connor Sparrowhawk, the young man from Oxford who suffered appalling neglect and indifference at an Assessment and Treatment Unit (or ATU) run by a branch of the NHS called Southern Health, and drowned in a bath, behind a locked door, in the midst of an epileptic seizure. The play also includes portrayals of his four siblings and stepdad, who brought him up from the age of three. But the character who ties the entire thing together is his mother, Sara Ryan, who wrote the book the play is based on (Justice for Laughing Boy, published in 2017), and whose words drive much of the story along.

On the day I visit rehearsals, Sara takes her place among the cast, calmly offering her thoughts, and closely watching Janie Dee – a very experienced actor, with a CV stacked with theatrical roles, as well as TV appearances in such shows as Midsomer Murders and Phoebe Waller-Bridge’s comedy Crashing – re-enact large chunks of her life. For both of them, it seems to be a fascinatingly weird experience: “This is the first time I’ve ever played someone real,” Dee tells me, and it’s clear this fills the role with an extra sense of responsibility.

The previous afternoon, I talked to Sara on Zoom. Five or six years ago, she said, there was talk of a primetime TV drama about her family’s story, which got as far as long interviews and a half-finished script, but never went any further. Then, out of the blue, she was contacted by the theatre director and playwright Stephen Unwin, and the two of them bounced his draft scripts back and forth from around 2020 onwards.

She and the rest of Connor’s family, she tells me, agreed to be part of what was being proposed, but on her first visit to meet the people in charge of staging the play, she started to feel a sharp pang of ambivalence. “I was thinking: ‘I don’t know what I feel about this – and I’m not sure at all, now it’s happening.’ But they bowled me over. They so got it. The whole point of the campaign we did” – to change the way people with learning disabilities and autism are treated by the state – “was that it wasn’t so much about Connor as this structural systemic experience and the way people are brutalised. They saw it as a very moving story that was deeply political, and they were committed to that.”

She pauses. “It’s not some sort of stupid, saccharine thing: ‘Look, this mum’s done something amazing.’ It’s much more complicated.”

“There’s a big reason why this play is really important,” Unwin tells me. “It says: ‘There was this lad, Connor Sparrowhawk, and his family, and he was funny and he was gorgeous.’ But when he died, if Southern Health had said to his family: ‘This is an awful moment, we got this completely wrong’, none of this would have happened, and we wouldn’t be here. A terrible thing happened because of dreadful standards of care, and then they were all guarding their backs and doing” – he grimaces – “reputation management.”

“There’s a parallel with the Post Office scandal,” he says. “Or Hillsborough. And don’t forget: there have been so many cases since this one.”

* * *

Connor Sparrowhawk was autistic, and had learning disabilities. These things seemed to sit at the heart of the indifferent way he was treated by the people who were meant to see to his care, but they came nowhere near defining him. As the play highlights, he was playful, witty and full of interests and obsessions, some of which – buses, David Bowie, and what his mum calls “a really overdeveloped sense of justice” – were immovable parts of who he was. He was nicknamed Laughing Boy, she says, because he had a habit of falling into very infectious bursts of mirth, and a talent for amusing other people, both of which are beautifully portrayed in the play.

In 2011, Sara began describing some of this in a blog called My Daft Life, whose archive is still online. “I used to write it mainly because he just made me laugh so much,” she says. “But he showed me such a different way of seeing life, on a daily basis. He used to ask ‘why’ questions a lot. And in the end, I’d think: ‘I don’t know.’ I’d have to say: ‘Well, that’s what we always do.’ And that isn’t an answer at all. He was good at that kind of ... scrutiny.”

Sara is an academic, who specialises in what her official résumé calls “learning disabilities, autism, growing older, [and] loneliness”. Her and Connor’s story – and the play – highlight a glaring vacuum that has yet to be filled, in the UK or anywhere else: we have some systems and structures built for autistic and learning-disabled children (even if they are creaking), but not for adults. I have a teenage son who has autism and learning disabilities, and a lot of what Sara tells me sounds very familiar: deep anxiety about the future; limited options; and the necessity of combining the choices we make with a dogged vigilance, which is often mistaken for being a pushy parent.

Around the time he turned 18, Connor started to become anxious, unsettled and sometimes aggressive. “It was out of the blue and it didn’t really make any sense,” Sara says. “His headteacher, who was lovely, always said she thought it was because his sister was going to university, and his brothers were beginning to talk about what they were going to do. And he didn’t have a future. There was nothing lined up for him; nothing for him to look forward to. And when he started to go downhill, it was just awful.

“I was so worried: I was doing research in this area, so I knew that quite a lot of [autistic] people end up in prison,” she says. “I was really worried he was going to kick off and something was going to happen. And then a friend rang and said, ‘There’s this unit’ … and you’re absolutely desperate; you don’t think about anything else.”

After being “clerked in” to the ATU, on his first night Connor was sectioned, which intensified the sense of enforced distance between him and his family. “With a bit more space, I’ve looked back and sort of thought: ‘Fucking hell, what were we doing?’” Sara says. “He wasn’t under section after about six weeks, so we could have taken him home. But these slow wheels were turning: it was: ‘We need to have a big meeting with everybody present to talk about what’s going to happen.’”

That meeting was eventually scheduled for Monday 8 July, but on the Thursday before, the unthinkable happened. Thanks in large part to the campaigning that followed Connor’s death, the awful details emerged during the long years afterwards: first in an independent investigation commissioned by Southern Health, then at Connor’s inquest in 2015, a medical tribunal two years after that, and in the Health and Safety case in 2018 that resulted in Southern Health being fined £2m.

When Connor was 15, he had experienced his first epileptic seizure. In the ATU, it was clear that he had another, but had only been given Bonjela, after he had bitten his tongue. On the morning he died, he had been in the bath, behind a locked door. One of the staff who was meant to be looking after him had been doing an online supermarket order. The inquest found there had been “inadequate communication with Connor’s family and between staff in relation to Connor’s epilepsy needs and risk”. Worse still, it was claimed by Southern Health’s lawyers that there was “no evidence” that he had had seizures in the unit, when there quite clearly was.

There is another element of the story that is just as mind boggling, and the way the play portrays it only heightens its awfulness: what Sara identifies as “mother-blaming”. At Connor’s inquest, the legal representatives of Southern Health staff brazenly attacked her for allegedly being “consistently obstructive and difficult”. She subsequently got a phone call from an anonymous member of its staff – something that was proved by a police investigation – calling her a “vindictive cow”. In 2018, a Crown Court judge said she had “faced not merely resistance but entirely unjustified criticism” as she pursued her campaign for justice.

Towards the end of our conversation, she says something that gets to the core of Connor’s story: “Nobody listened to Connor as a human being. He was just a person with a learning disability.” The fact that this was part of a huge mess of failure and prejudice was shown by something that came to light two and half years after Connor’s death. Between 2011 and 2015, Southern Health had only investigated two out of 327 “unexpected” deaths of learning-disabled people in their care. These are the kind of plain, chilling facts that the play will present to its audiences.

***

Stephen Unwin has a 27-year-old son called Joey, who has learning disabilities. In 2017, he wrote a play called All Our Children, about the state-sanctioned murder of disabled children in Nazi Germany. This new play, he says, is “the most important thing I’ve ever done”.

Unwin is an impish, endlessly talkative presence, whose work keeps returning to one key subject: what the labels given to people mean for how society treats them. “Giving people names and categories is fundamental to denying them their humanity,” he says. “I understand the value of a diagnosis, but you want to start saying: ‘Autism? Learning disabilities? Let’s start talking about what you need to have a good life.’”

Drama, he thinks, can open the space for a public conversation about all that, but it needs to retain a political way of thinking about people’s stories. “What the arts are tending to do at the moment is make it all about the individual, whereas I think we need to start saying: ‘What is it about our society and our politics that means these people aren’t getting the same opportunities and care and whatever else as their non-disabled brothers and sisters?’”

As Unwin notes, the position of thousands of people with autism and learning disabilities might actually be even worse than that: as well as Connor’s case, Laughing Boy shines light on both a past and present replete with awful neglect and abuse. Two years before Connor’s death, the BBC exposed a horrific scandal at the privately run Winterbourne View hospital near Bristol. A long list of similar stories have been revealed since then, across the UK.

Two days before my visit to rehearsals, I read an article by the campaigning journalist Ian Birrell that highlights a glaring political failure. In 2019, he points out, an NHS plan backed by the government said that by the end of March 2024, the number of people with autism and learning disabilities detained in mental health hospitals would be halved, relative to the 2,900 held in 2015. The latest NHS figures, taken in September 2023, show 2,045 detentions. To show what these detentions often entail, Birrell tells the story of a 24-year-old man called Eddie Green, who first entered an ATU when he was 13. In the years since, his experiences have included being “stuck into a small padded solitary cell without windows, forced to sleep on a plastic mattress, use a bowl for his toilet and handed food through a hatch to eat on the floor”.

This is why the script of Laughing Boy contains Sara’s angry insistence: “People like Connor are still left to live, and sometimes die, in squalor: neglected, ignored and worse. And so the fight goes on. It has to.”

***

As I watch the seven-strong cast rehearse, one of the play’s most remarkable qualities becomes clear again and again, particularly in the performance of Alfie Friedman, the 21-year-old actor who plays Connor. It is most movingly woven into imagined dialogues with his mum about what followed his death: a kind of serendipitous, bittersweet magic that kept surfacing as the campaign, whose hashtag was #Justice4LB, rolled on.

In January 2016, for example, a crowd of campaigners led by Connor’s family pitched up at a meeting of Southern Health’s board, to demand resignations. What they did made it on to the BBC One’s News at Ten, after an item about the death of one of Connor’s favourite musicians. “So after David Bowie, the next thing you saw was Connor’s photo. He also ended up with the three buses in Northampton with his name on [in tribute],” Sara says. “He always wanted a heavy haulage company, and he ended up with a heavy haulage truck with his name on.” She laughs. “He even ended up with a bomb-detection truck with his name on. And he always loved justice. So all his ambitions kind of came to happen in the course of the campaign.

“And in this play, all that stuff is going to be visually represented,” she says. “It’s going to be so weird.”

At the first night, she explains, the audience will include not just Connor’s family, but some of his teachers, as well as people who were centrally involved in all that campaigning. “The audience is just going to be everybody in the book, pretty much. It’ll be really moving.” But what, I wonder, does she want other people to take from what they see?

Her reply is bracingly straightforward; it summarises everything we have talked about. “I want people to leave the theatre and think: ‘Bloody hell, that boy mattered. And these people matter.’”

Laughing Boy is at Jermyn Street theatre, London, from 25 April to 25 May; and Theatre Royal Bath, 4 to 8 June.

Contributor

John Harris

The GuardianTramp

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