Connor Sparrowhawk died tragically aged 18, left alone by people who should have been caring for him. George Welch spoke to his mum Sara Ryan as she launches her book telling of the real Connor and her struggle for justice in his name
His mum spent about 15 minutes carefully explaining what she was going to do and how the boy wasn’t, under any circumstances, to move from the settee.
She rehearsed and re-rehearsed every scenario she could think of to make sure he fully understood that, no matter what, he was to stay put.
If the postman knocked or a parcel was delivered, a friend called round or the dog wanted to go out in the back garden, he was to stay put.
She would be gone for a matter of minutes as she dashed 50 metres to the local Co-op to pick up some milk – but the moment the front door slammed shut she realised she’d forgotten her key.
Sara Ryan, the mother of Connor Sparrowhawk, who died in a bath while supposedly under close NHS supervision, documented copious funny stories and mishaps in a blog documenting what it was like to care for a child with autism, epilepsy and learning disabilities.
Sara did eventually coax Connor, who was seven or eight years old at the time, off the sofa and convince him to open the window so she could clamber back into the house.
“You know everything I just told you? Forget it! It’s your mum, Connor!”, she screamed through hysterical laughter after being resolutely ignored.
Connor was known to his family as Laughing Boy because of how much they heard him doing just that.
He died in July 2013, aged just 18, drowning after a seizure with no staff there to help him.
When his behaviour worsened earlier in the year his struggling family turned to the professionals for help, entrusting carers at Southern Health NHS Foundation Trust’s Slade House residential facility in Headington to look after him.
Connor’s family had cared for him for more than 18 years – but after 107 days at the trust’s unit he died.
Sara, an Oxford academic who specialises in learning disabilities and autism, has written a book about her experiences with the health trust, which eventually admitted the death of her son was preventable.
The book documents Connor’s home life and the events leading up to his death, the fall out afterwards and the launch of the #Justice4LB campaign group.
It provides a heart-breaking perspective of losing a child, but also sheds light on an under resourced and resource-driven system that, Sara says, “strips away any humanity and any imagined future” from those with learning disabilities.
“When I started the blog, it was because people said I should write a book about Connor about six years ago because he was so funny – I was always going to write a book,” Sara explained.
A flag devoted to Connor has been flown at Glastonbury music festival, a dedicated walk in Spain stretched his story to mainland Europe and Sara’s niece included the battle for justice in her undergraduate dissertation.
The Justice4LB campaign has gathered momentum since his death four years ago and Connor, who had pop-star hair and was adored by his three brothers and sister, would have loved to know he had become ‘mainstream’.
It took nine months to make people aware of the severity of what had happened, but since then, his story has made headline news in newspapers and on television sets across the country.
“I’m feeling pleased because Connor always wanted to be mainstream and he died because he wasn’t perceived to be mainstream. It took a long time for there to be serious interest in what happened – so now I think ‘he’s made it’,” Sara said.
What happened to Connor is helping to change the way people think about how those with learning disabilities should be treated.
But a lack of subsequent changes implemented within the NHS has left Sara frustrated and questioning the success of the campaign.
“Getting a better mainstream understanding of what’s going on and what’s wrong [is one of TeamLB’s main successes]. We have made great steps forward but it hasn’t actually translated into change…[but] we’ve shone a light on a lot of crap,” she admitted.
“This might be a shift. This isn’t typically a mainstream topic so maybe this groundswell will force people to open their eyes.”
The social movement born out of the pain of losing Connor has been widespread and, without Justice4LB’s determination, the circumstances surrounding Connor’s death would have been hidden from public scrutiny.
Achieving accountability for Connor’s death has proven a ‘gargantuan’ task, with the last four years being a mixture of “exhausting, enraging, distressing and heart-warming” for Sara and her family, including partner Richard Huggins, a political scientist.
“We had no idea that Connor’s death would generate a ground breaking social movement and lead to the uncovering of systematic failure to investigate the deaths of certain patients in the UK,” Sara said.
Connor was mad for buses and coaches. He couldn’t get enough of them. A collection of old tickets, models and magazines – you name it – littered the family home in Headington.
In fact, the home remains full of bus-related memorabilia now, acting as a constant and warm reminder of one of Connor’s most treasured passions.
Connor was ‘buzzing’ on the morning of his death when he woke up looking forward to a tour of the Oxford Bus Company.
After he died, the firm sent the family an Oxford Bus die-cast model. Sara, visibly moved when discussing the heart-warming reaction of supporters and the public, said: “People did such lovely things.
“There are so many poignant things like that, the fact that his last thoughts, other than probably me, would have been the bus company.”
To mark his first birthday after passing away, the family had a party at the Oxfordshire Bus Museum in Long Hanborough. A box of hundreds of bus tickets was scattered on his grave.
One of the main things that struck Connor’s family when he approached 18 was the lack of aspiration attached to his future, particularly by social services.
However, Connor had ambitious plans – he wanted to own a haulage company and marry a beautiful, brown-eyed woman.
His mum believes he would have been great at a job that worked closely with his interests, which centred primarily on buses and coaches.
Just six per cent of learning disabled adults and 16 per cent of autistic adults are in employment in the UK.
Sara is fearful this won’t improve until social care begins to treat people like Connor as a human with aspirations.
She added: “Connor was so pleasant to be around and he could have made a contribution to the social life of the workplace, which is completely overlooked.
“There’s a lack of recognition that certain people have something to contribute. If you see somebody as a burden as opposed to someone who can offer something, you are automatically doing them down.”
What’s in a label?
Sara is a smart, funny woman – and she has a keen eye for injustice.
She has fought Southern Health, which originally claimed Connor died of natural causes, and helped bring about major investigations into how NHS organisations mistreat those with learning disabilities and record ‘unexplained’ deaths.
Injustices have been fought in reports, investigations and the courts, but for Sara the injustices begin when people are first diagnosed.
Connor was diagnosed with autism at the age of three (he was 16 when diagnosed with epilepsy) and for his early years his family subscribed to the negative view that it would hold him back.
“Him being labelled [with autism] as a tot was devastating, it seemed such a negative thing,” Sara said.
“Then you stepped back and looked at him; there was nothing wrong with him, he’s just different, but by that point the label defined him [in the health/care system].”
But this didn’t hold Connor back – he was, to his family, ‘just Connor’, a young man who refused to be defined by labels.
Sara said: “Once we got over our fixation with it [the labels], he of course was dealing with life in his own brilliant way. He had a wonderful time at secondary school [John Watson].
“He was so comfortable with himself and was so confident. He had interests he really enjoyed and he was lovely to hang out with.
“His sort of confidence was undeterred by the limitations imposed on him by an unfit-for-purpose system.”
Sara believes autism and learning disability labels ‘eclipse’ engagement with actual health issues, and this, as a result, contributes to the premature mortality of learning disabled people in the UK.
She added: “Connor died because he wasn’t seen as a fully human person or being. He was more than human to us.
“Too often, people like Connor are disregarded, dismissed, lead impoverished lives and die preventable deaths.”
Southern Health pleaded guilty to breaching health and safety law at Banbury Magistrates’ Court last month. A date has not been set for sentencing, contrary to media reports.