London play explores how disability bias in hospital can be deadly
By Louise Kinross
In 2015, BLOOM interviewed Sara Ryan about her autistic son Connor's death. The teen drowned in a bathtub alone, during a seizure, in a British National Health Service unit. His family called him Laughing Boy. Southern Health was later fined $1.8 million when an independent investigation found his death preventable. In April this year Connor's story came to the stage in a play called Laughing Boy. It was written and directed by Stephen Unwin and adapted from Sara's memoir Justice for Laughing Boy. We spoke to Sara, a social scientist at Manchester Metropolitan University, about Connor, the play, and her ongoing research.
BLOOM: Can you describe Connor for us?
Sara Ryan: Connor was a very interesting, unusual, funny, generous, quirky person. He was a young man with a very developed sense of social justice. He had things he liked with a passion, like London buses or particular types of music, TV shows or comedies. He was very questioning of life. He was always asking why? It was his go-to word for his curiosity.
BLOOM: How would you describe the play Laughing Boy?
Sara Ryan: It's extraordinary. There's no interval. There are four chairs. There are only seven actors. Some of the younger actors who play Connor's brothers and sister also play different parts.
It's intricate, non-stop movement, laughter, passion and mucking about with a backdrop of home movies and extracts from key documents about his death on the screen. For example, there's an extract from the [Southern Health] board minutes published two weeks after Connor died that says he died of natural causes.
It's an explosion of our family life which was big and noisy and fun, interspersed with what happened. Then at moments throughout the play the actor playing Connor and the actor playing me have those questions that are in my book, where Connor asks why he died, was he old, and what happened? In those moments everything goes dark and the lights are just on the two actors. It was so moving. I saw it a few times and I’ve never seen so many people—men, women—cry.
It includes a short film done by video graphic designer Matt Powell and music composer Holly Kahn of our 107-day social media campaign, which marked the time Connor was in the NHS unit. Each day was adopted by someone who did fundraising or raised awareness. By the end people were double booking and we had about 300 contributions. The film ran through the 107 days like a ticker.
The Justice Quilt [stitched together from hundreds of pieces of cloth art children and adults in the UK and seven countries made] was projected onto the stage at a part in the play when Janet Read, who made the quilt, talks about it. One patch with a flowery cotton cut-out that says 'Why?' was superimposed on the screen as the cast said 'Why?'
Right at the end Connor's face as a young child fills three panels on the screen and all we could hear was his laughter.
BLOOM: Did you have reservations about your family's story being told in this way?
Sara Ryan: Back in 2017 we were contacted about a TV drama script. We had all this to-ing and fro-ing about that, but then nothing came of it. So when Stephen got in touch three years ago and talked about a play, I thought it probably won't happen. Last August he said 'These are the dates,' and I was quite ambivalent about it.
I went to meet the people who run the theatre—Stella Powell Jones and David Doyle. They were so lovely and seemed to understand the important bits of the story and I felt very reassured. I left the meeting feeling this is something to really celebrate: Connor in a play on a stage in London. Then they said they'd found a young actor who was superb, and he totally managed to be as Connor-like as you can get.
On the first night, which was a preview night, the whole audience was made up of family and friends and teachers. Everyone who had a part in the play was in the audience. Some people got in touch after to say they weren't looking forward to watching the play but they were absolutely blown away by it.
BLOOM: It seems a play would impact people in a different way than a book or your social media campaign.
Sara Ryan: Yes. Because it's live and you have actors telling a story it's so much more powerful than other mediums, if it's done well. The play brought people into our world in a more visceral way. They'd been transported into a place, a space, that was so emotional. It's such a terrible story. What happened to Connor never should have happened. And the response by the state was atrocious.
The play includes one point where the Care Quality Commission had written a damning report about the kind of care that was being provided and I was asked to do an interview on BBC Breakfast News. When I got back to work there was a vicious message on my answering machine from a Southern Health staff member saying I was vindictive and a nasty cow.
The play has generated a community and collective feeling. For example, the university where I work in Manchester arranged a coach to drive people four-and-a-half hours there to see the play in a tiny theatre. Then drive back. Students, staff and people with [intellectual] disabilities attended.
BLOOM: The last LEDER report found almost half of deaths of people with autism and intellectual disabilities in the UK in 2022 were preventable. Has any progress been made in improving care to this population?
Sara Ryan: No. We wanted the play to be political because it is, and to be more than about Connor. His death was just one, and these preventable deaths are still going on. One of the most powerful moments of the play is when the theatre goes dark and there's a beautiful montage of 21 children and adults on the screen who died in the last 10 years. They were the focus of inquests reported on by George Julian, who is a journalist. The atmosphere in the room, you could cut a knife with it. The audience had been hearing about this one lad who they loved in the play, and to suddenly see all of these other people.
BLOOM: A recent study in the U.S. found adults with Down syndrome were six times as likely to have a DNR order placed on their admission to hospital for COVID pneumonia vs. people with the same illness without Down syndrome. What have you learned about trying to change disability bias, especially within the system.
BLOOM: That is such a good question. The fact that nothing seems to be changing is terrible. George Julian and I repeatedly have this conversation. For her, reporting on these LEDER inquests, over and over again, is harrowing. She'll say: 'I don't know if it's important.' But I say: 'If it's not documented, nothing will change.' We have to keep making things visible until people can no longer look away.
There are pushes to try to be more equitable with health care delivery, but some of this stuff is based on archaic assumptions that people are on a DNR because they're of weaker stock. So there's a eugenic underpinning to it. They aren't going to live that long, and we have limited resources, so we won't extend our resources to keep you alive. Because you don't really count as a person. We look the other way and don't do an investigation. You wouldn't believe some of the stories George Julian has reported on. One man with Down syndrome was in hospital for 21 days and never got any food. These should be front-page news.
The people who were defending the healthcare consultants in our case said: 'But you didn't tell people to watch him in the bathroom.'
When a patient has a learning disability, the staff take their common sense and leave it at the door. I still feel sad about how when Connor got diagnosed with epilepsy he was never invited to the [seizures clinic] in the hospital. For your average six-year-old, you get the diagnosis and you go on to the clinic and get information and you can talk about it and meet other kids with epilepsy. He didn't get invited to that clinic, and it's just another example of exclusionary practices.
I'm writing an academic book and my reading is making me want to weep. One of the research projects says we did a systematic review of whether exercise made a difference to people with [intellectual] disabilities.
BLOOM: Why? Because they have a different heart? Exercise benefits everyone.
Sara Ryan: Yes, because people with [intellectual] disabilities don't have the same heart. To think that someone had gone and got funding for that, that it was thought to be a sensible idea.
BLOOM: How do you keep at your research when it's so uphill? Do you ever feel like removing yourself from this field?
Sara Ryan: I feel Connor was really big on social justice and he hated injustice. I feel it as a pain. I couldn't just park it all myself and go off and crochet or do the stuff I love doing because it's still happening and it's so wrong.
BLOOM: What do you do to create mental space for yourself?
Sara Ryan: We live in the Peak District. We can walk for miles through ancient parks and over stiles. The views are in every direction and are stunning. That is so restorative. You realize these parks have been walked on for hundreds and hundreds of years. It's very grounding.
BLOOM: What advice would you offer a parent who suspects their child's death was avoidable?
Sara Ryan: They would need to get legal representation. They would need to get in touch with the INQUEST charity who can put them in touch with pro bono lawyers. They need as much advice and support as they can get. They need to know that if they're going to try to get accountability they're going to be in it for the long haul. It will take years and they have to be prepared to be shredded by the defence—the barristers of the trust—or the local authority or the police. It's a gruelling journey.
We gained strength from our social media campaign. We heard from so many people. It's still going on. People will get in touch and say 'My son just died, or this just happened.' Social media was a connector for us. Without it we wouldn't have had anything.
BLOOM: How would you describe your research?
Sara Ryan: I'm researching how to change the way in which people with [intellectual] disabilities are viewed and understood. That's my aim. We need a radical transformation to understand that people with [intellectual] disabilities have value.
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