A trip to London’s West End to see a highly acclaimed play is usually an exciting, joyful event, yet the reverent hush as the audience shuffled to their seats to watch Laughing Boy suggested this would be a totally different experience.
Perhaps it was because this is a story you wish didn’t have to be told. Laughing Boy is about Connor Sparrowhawk who had a seizure in the bath and drowned. At the time, he was staying in an assessment and treatment unit run by Southern Health NHS Foundation Trust. The trust initially attributed his death to natural causes, but after years of campaigning by the family an independent investigation concluded his death could have been prevented.
The play begins with a powerful punch on a near-empty stage with Alfie Friedman, who plays Connor, saying: ‘I died this morning. In the bath. I’m dead now.’
Thus begins a rollercoaster of a production which started with a life-changing call on a sunny day 11 years ago to Connor’s family being pushed to near breaking point as cogs in a cruel, cracked system when they tried to prove that their loved one died due to indifference and neglect.
The playwright Stephen Unwin who adapted the play from Justice for Laughing Boy, a book written by Connor’s mother Sara Ryan, said it was a ‘terrible story but must be performed with optimism, laughter and satire’. This was achieved is spades, especially in the scenes where Connor is just being Connor – a beloved son, stepson and sibling who loved buses, Eddie Stobart, Lego and making people laugh.
The light humour in the play is juxtaposed against heart-breaking fury, showcasing the family’s brutal battle with an NHS trust and the government, which should have ended the neglect and poor care of people with a learning disability once and for all. But sadly, it didn’t. Not yet anyway.
On 4th July 2013, Connor Sparrowhawk, an 18-year-old man who was autistic, had a learning disability and epilepsy, was left unattended in a bath despite repeated warnings from his family and drowned during an epileptic seizure.
It took until 2017 before the NHS Trust admitted “systemic failures” and pleaded guilty to breaching health and safety laws. It was fined £2m.
Connor’s death reignited the debate about assessment and treatment units following a documentary about Winterbourne View, a privately run unit where the abuse of patients with learning disabilities was exposed by BBC’s Panorama in 2011.
Since then, the government has set numerous targets aimed to get everyone inappropriately placed in institutions back in the community. Yet, all of these targets have still not been met. Even today, there are still more than 2,000 people with learning disabilities and autism locked away in mental health hospitals.
Stephen Unwin says he had two aims when he adapted Sara’s book for the stage. Firstly, he wanted to ‘rehumanise’ a young man who the world had somehow made to seem ‘abnormal’ and therefore unworthy of the human rights that we all take for granted. Secondly, he wanted to show how the system that is set up to supposedly help ‘people like Connor’ is dysfunctional and even cruel.
“For the first to happen the audience needed to experience something of the pleasure, joy and love that Connor generated, and the second required satire, critique and sharp-edged analysis,” Stephen says. “Too much cultural representation in this area focuses on identity issues and not enough is about the way society lets them down in the worst ways imaginable.
“Laughing Boy is a political play which aims to make people think even as they feel, cry as they laugh, and commit to the fight for justice not just for Connor, but so many others. Optimism, laughter, nature and energy are essential!”
He adds that the awful fact is that assessment and treatment units are not fit for purpose and people are often locked away in them for months, years even, largely forgotten about, except by their desperate families who do whatever they can to get them out.
“I think there is growing awareness among families about what can go wrong and some (modest) changes in practice. The big problem, in my view, is the general ignorance and prejudice about learning disabilities and we’re still in early days in terms of changing that. Some of the recent cultural initiatives have, I believe, been counterproductive. A broader recognition that ‘people like Connor’ matter. But also that there is a long way to go before people with learning disabilities or who are autistic can live safe, happy, fulfilling lives,” he says.
In their review of Justice for Laughing Boy, the Oxfordshire Association of Care Providers described the book as a “a searing indictment of our health and social care system”. The play portrays the same terrifying message: our care system is failing those who it is supposed to protect.
Connor is not the first or last person to die a preventable death under NHS care. The play included a graphic reminder of continuing premature deaths in the form of a photo montage. The montage showcased 18 others who have died avoidable deaths since Connor died, highlighting just how many people could still be here today if they had received the care they needed and deserved.
Sara and her family fought tooth and nail for years before Southern Health NHS Foundation Trust admitted they were responsible for Connor’s death. But what about those that don’t have anyone to fight for them? We cannot and must not let their lives and deaths be forgotten; people with learning disabilities are not second-class citizens and should not be treated as such.
Telling Connor’s story through the medium of a play has added a certain weight to this story which is so often lost in reports and other written narratives. The play is confronting and emotionally devastating in a way that cannot be conveyed with the written word; it showcases an appalling absence of care and support by the professionals in charge of Connor’s care, set against the love and warmth shown by his family members. George Julian, a member of #TeamLB who live tweeted Connor’s inquest, said the play bought Connor’s story and the campaign for justice ‘to life’.
We have seen the impact of plays, TV shows, films and other art mediums time and time again, most recently with the Post Office scandal, which led the government to announce a new law just weeks after the TV show aired. In a similar vein, Laughing Boy has reignited the #JusticeforLB campaign and has forced the audience to take a closer look at how our care system treats one of society’s most vulnerable groups.
However, this action seems to lie in the hands of those who already care about people with learning disabilities, typically family members and campaigners who want better lives for others like Connor. While coverage of horrifying abuse and neglect has begun to enter into mainstream media, these events rarely spark mass action and protest that similarly cruel, painful and inhumane issues seem to create. We must ask ourselves why this is and how we can mobilise collective action.
“We felt the anger, grief and injustice coming from the stage, that we always feel every time we think of Connor, the Justice For Laughing Boy Campaign, or look at his picture hanging in our office.” — My Life My Choice
There are a vast number of lessons to be learned from this thought provoking and harrowing play. So much so that many audience members have called for the play to become integrated into mandatory staff training. However, Connor’s mum, Sara Ryan, says this risks dimming Connor’s story and turning it into a ‘tick box’ exercise.
She said: “It was interesting that some people felt the play should be used in training which to me, underlined the current malaise within this area. It was a celebration of a young man who was a beautiful and unusual character and the play itself is a form of political art. To try to dim that by squashing it into a mandatory training tick box is missing the point.”
Sara does agree, however, that more professionals working with people with learning disabilities should have come to watch the play, as those who chose to attend will likely already be on ‘the enlightened side.’
Sara also wants to see professionals take families knowledge and expertise more seriously. Parents know their children better than anyone else, but their voices are often ignored and disregarded in inpatient settings.
“The response to Connor’s death by the so-called caring professions of health and social care was brutal and all too familiar now as so many families have endured similar experiences within that space of harrowing grief and devastation,” Sara says. “[Families’] expertise and knowledge developed over years and underpinned by love is batted away and dismissed by professionals. There needs to be a cultural shift in which the love, labour and knowledge of family carers is recognised and celebrated rather than viewed as problematic.”
Sara’s advice for professionals working with autistic people and people with learning disabilities is simple: listen and act.
“Listen, listen harder, think about what you are hearing and seeing and then act in ways to help and support the person. The labels are really irrelevant in many ways and can dent common sense and basic good practice,” she says.
“I fervently wish for Laughing Boy to be seen by colleagues, associates, and friends so they can understand the profound impact that our daily actions can have on people’s dignity, wellbeing, and life chances.” — Jacky Taylor
Sara says the current LeDeR (Learning from lives and deaths of people with a learning disability and autistic people) process is “not good enough” and she wants to see a national mortality review board set up to thoroughly scrutinise preventable deaths. Without such action, many more deaths are at risk of being overlooked, particularly those who do not have families or advocates to fight for justice on their behalf.
Telling and retelling the stories of those who have died preventable deaths is therefore an integral part of shifting perceptions and creating real, tangible change for people with learning disabilities, as Sara explains:
“I think Connor, and all the other people with learning disabilities who died preventable deaths as an outcome of embedded failings in health and social care provision should have their stories told, over and over again. What happened to Connor should have been the making of a scandal and yet remains a largely overlooked area.
“People like Connor are simply not seen as human and what Laughing Boy did was centre the rich humanness of Connor in a brilliant and impossible to disconnect way, which is very rare. People have been visibly moved and shaken by the power of the play and we need this impact amplified in order to shift the way in which people with learning disabilities are perceived.”
The Laughing Boy play tour has now come to an end, but there is no doubt Connor’s story will live on in the hearts and minds of all who watched the performance. The play is a strong reminder of the power of storytelling in making stories feel real and unforgettable.
According to Stephen, there is a general view that the basis of the social contract is unravelling and that the people placed in positions of power and trust are all too often failing in their fundamental duties.
“This view, sadly, is not being articulated by politicians or the media and it’s left to the arts to make the case. Dreadful as the Post Office behaviour was, it isn’t as dreadful as what has happened to so many learning disabled and autistic people, but I fear that this story won’t get as much traction,” he says.
“If there could be one outcome from the play, it would be a wider understanding that Connor and other people with learning disabilities matter,” Sara adds. “Until that happens, very little is going to change.”
Sara Ryan and Stephen Unwin will be speaking at our conference in September on the importance of telling our stories and campaigning for vital change
