Thanks for inviting me to speak today. I’m a great fan of the Cultural Inclusion movement and as someone who’s been working in the theatre for 40 years, and who’s the dad of a young man with severe learning disabilities, I hope I have something to offer.
I want to talk about my stage adaptation earlier this year of Sara Ryan’s book Justice for Laughing Boy, the account of the death in an NHS Unit of her son, the 18-year-old Connor Sparrowhawk, and the fight for justice that ensued. It was one of the most extraordinary things I’ve ever done and, I think, offers useful insights into the cultural representations of learning disabilities and disability injustice.
In some ways the story felt personal. My second son Joey is just a year younger than Connor, and, like Connor, has learning disabilities and epilepsy. Like Connor he needs help with certain things. And like Connor he generates great joy in his family and friends, and laughter and love surround him wherever he goes.
Joey makes us all laugh. Connor’s nickname was ‘Laughing Boy’.
But there the similarities end. Because what happened to the 18-year-old Connor is that he was taken from his family home and plunged into a hell that is almost impossible to comprehend.
Slade House in Oxford was what is known as an Assessment and Treatment Unit, one of the deeply dysfunctional NHS institutions set up to help (mostly) autistic people whose care has broken down and who could benefit from a short and focussed intervention.
The dreadful fact is that these places 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.
Connor spent 107 miserable and lonely days in Slade House: no proper assessment was made, no treatment was offered, his freedoms were restricted, visits were controlled and finally, despite repeated warnings, he was left unattended in a bath where he drowned while having an epileptic seizure.
This was eleven years ago: 4 July 2013.
In the face of the family’s unimaginable grief, a growing campaign for justice was created, not just to establish Southern Health’s responsibility for this entirely avoidable death, but to expose the many cases of neglect, cruelty and abuse which is still so often the experience of people in a wide range of medical, educational and residential institutions.
The campaign was a model of its kind, drawing together people from many different backgrounds and skills, who found themselves confronted by an appalling culture of corporate buck passing, dead-eyed denial and the vilest kind of victim blaming.
But eventually, the world took notice.
And so, a few years ago, and armed with Sara’s brilliant book, I set out to dramatise the story for the stage: not just to tell audiences about what happened, but help them understand the challenges faced by so many people with learning disabilities and their families today.
It was strange trying to give dramatic shape to a group of people who are—with one tragic exception—very much still with us. I was determined to respect their experiences and allow audiences to feel something of their tears of grief, tears of rage, but also their determination to create a better world.
But I also knew it had to be a vivid drama and striking the right balance was hard.
Fortunately I had two things on my side.
The first was Sara’s book. She lets us in in a way which is honest, revealing and, as with the best writing, rich with contradiction. She offers an overwhelmingly powerful account of what led up to her son’s death and even intersperses the book with brief imaginary dialogues with Connor, which I transferred almost verbatim.
Although the actors playing Sara (Janie Dee) and Connor (Alfie Friedman) didn’t double everyone else (Forbes Masson, Charlie Ives, Lee Braithwaite, Daniel Rainsford and Molly Osborne) played a huge range of parts, but continually returned to the family unit. There was no scenery (just a curved white wall, a wooden floor and four chairs: thank you, Simon Higlett) or costume changes, locations were suggested by projections (not just of places, but logos, text etc, from the brilliant Matt Powell) and occasional sound effects (Holly Khan) and lighting (Ben Ormerod), and much was played directly to the audience. The pace was fast and energetic, funny and sharp, to reflect the wildness and disorientation of the whole experience
Connor was onstage all the time, watching and commenting, even though much of the action unfolded after he had died. As you can see from this photograph, my favourite photograph of the show, he loved London buses.
In writing and staging Laughing Boy I had two clear objectives.
The first was to show that far from being an oddball, Connor was a young man like any other. There was hardly any reference to his learning disabilities or autism, and I avoided all those tropes about special powers. What I wanted to do instead was to ensure that the figure traditionally regarded as strange was seen as entirely human, part of a family, part of the community in which he lived.
I also wanted to show that the incredible campaign that emerged after his death was driven by the most of ordinary of questions: why had this happened and what made it possible?
But I also wanted to show that the world around him, the world that was supposedly set up to help him, to provide support when things were difficult, and to be transparent when things went wrong, was incompetent, dishonest, self-regarding and downright peculiar.
And so what became clear to me was that Laughing Boy was a perfect example of what Bertolt Brecht called ‘the alienation effect’. This is the aesthetic form which encourages the audience to look at the world from a fresh perspective: to make the strange familiar and the familiar strange. This allowed us to rehumanize the person who had been dehumanized and provoke questions about the people and systems who we assume are there to help: and that, I’m afraid, in this case includes the NHS, in particular Southern Health Trust.
The alienation effect draws attention to the theatre’s artifice. But by doing so it also reminds the audience that the real world is out there and that engaging with the real world matters. Let me give you two examples, one small, one much more significant.
At the top of the show, as the audience were coming in, the actors milled around on stage, talking to the audience, taking selfies, just being real before it started. Anyway on the first preview Forbes who played Rich, Connor’s stepdad, saw the real Rich was in the auditorium, and went over to him, shook him by the hand and jokingly apologized that he was playing him in his native Scottish accent. It was a weirdly important moment, because it signalled to Rich and Sara and everyone who saw it that Forbes knew there was something more important than his performance in a play, namely real life itself. But, paradoxically, by directing our attention to the reality of Connor’s family and the story of what had happened, the artistic event became more significant, not less.
A more important example of the alienation effect was the moment late on in the play when Sara explains to Connor that he’s not the only learning-disabled young person to die in NHS care of neglect and worse. Suddenly a huge projection of 18 faces came up. ‘All’, as Sara says in the play, ‘with the full range of humanity and gorgeousness. All dead. All ghosts. Beautiful startling ghosts.’
In some ways it was the most powerful moment in the show. Its raw reality took the audience’s breath away. It led us away from the cosy comforts of a little London theatre to the reason why the play was happening. By refusing fiction for a moment, we understood the nature of injustice more vividly.
One proof of what we achieved was the fact that at the end of the 90-minute show, many people in the audience didn’t want to leave the theatre and sat there, some in tears, some talking to each other, some just staring into space, all trying to understand how it is possible that such injustice is possible
For the dreadful fact is that the approximately one and half million people across the country who have some level of learning disability are still forgotten, neglected and mistreated. The culture of appalling negligence and evasion described in Laughing Boy is everywhere to be seen, and Connor Sparrowhawk wasn’t the first young person to die in an institution supposedly set up to help, and won’t be the last.
In 2017 I wrote a play called All Our Children about the Nazi persecution of disabled children which was also staged at the brilliantly principled Jermyn Street Theatre. Tragically Laughing Boy was its dreadful and logical sequel.
A change has to come. Maybe this play can, in some small way, help to make a difference.
So terrible being the dad of a learning disabled young man. pic.twitter.com/innKcdKFje
— Stephen Unwin (@RoseUnwin) January 1, 2021 " target="_blank" class="sqs-svg-icon--wrapper twitter-unauth">