It must always begin with the fateful sunny day in Oxford in July 2013 when Sara Ryan received a call to tell her that her 18-year-old son Connor Sparrowhawk was on his way to hospital in an ambulance. She rushed over there only to be told when she arrived that nothing more could be done. He would not survive, having been found unconscious in the bath following an epileptic seizure. His death had occurred in an Oxford assessment and treatment unit to which he had been admitted four months earlier. In Ryan’s words: “Connor drowned in the bath while staff did a Tesco online food order eight feet away.”
The original idea had been that Connor would be admitted for a few weeks, to receive the assessment and treatment that the unit’s name implied it could offer through its team of specialist staff. On his first night, he was sectioned and restrained face down – nothing remotely similar had ever happened to him before. The nightmare worsened from then on, culminating in his death.
Connor was nicknamed “laughing boy” by his family and friends and Ryan’s first book, which recounts the harrowing story of the family’s three-year fight for justice, is called Justice for Laughing Boy. Part of her mission was evidently to reclaim her son as a human being so that he would not be some cold statistic – another person labelled with learning disability, autism and epilepsy, who died, as did many others, in the “care” of Southern Health NHS Foundation Trust. As she wrote: “I’ve long raged against the lack of recognition of the value and sometimes brilliance that Connor and so many others bring to society. The ‘learning disability goggles’ often worn by health and social care services erase anything other than the learning disability label.”
She succeeds brilliantly in evoking the son (one of five siblings) she loved so much and lost in such a devastating way – his attractive quirkiness, his insight, his love of buses and lorries and everything associated with them, his humour, his coolness and his contentedness when things were right.
Ryan is a gifted comic writer and has a terrific humorous style so, even in the midst of this appalling tale, there are sections about Connor, the things he said and did and other people’s reactions to him that can make you rock with laughter.
An account of a visit in a group of 20 to an underground cave, when Connor caused a mass panic and evacuation, calling down help from God and Johnny English to rescue them, is particularly memorable. This is all important because it presents an overwhelming riposte to the libel that too many professionals – psychiatrists, psychologists and social workers among them – perpetrate against people with learning disabilities when they see nothing more than a label in front of them.
Their failure to see the humanity beyond the diagnosis is criminal. Many professionals see the birth and ongoing existence of a person with a learning disability as a tragedy in the lives of their families. The tragedy is not the existence of people with learning disabilities but the blighted lives they often lead because of professional blindness to their human status, and unnecessary deaths in this group as a result of professional neglect, indifference and ignorance. A form of justice was achieved. An inquest found, despite the trust’s defence, that Connor’s death was caused by neglect brought about by serious systemic failings, and errors and omissions in care. A review of the trust found that 337 people with learning disabilities had died in its “care”. Overall, the organisation had failed to investigate more than 1,000 unexpected deaths. Investigations were carried out by the Care Quality Commission and the Health and Safety Executive.
Some time after the inquest and inquiries, chief executive Katrina Percy was moved from her role to a new post at the trust at the same salary. Shortly after, she was made redundant and received her full NHS redundancy entitlement. There could, of course, be no real justice. The injustice had occurred and was irreversible: Connor had lost his life. But the formidable campaigning of Ryan, her family and their army of supporters, the high-level news impact nationally and the impact of her outstanding book did achieve some just outcomes. The callous indifference, neglect and insouciance that characterised the whole wretched affair as well as the egregious response of the trust to Connor’s death were dragged out of the shadows and displayed in the full glare of public scrutiny for all to see.
There was, at last, some accountability. The need for action on such unnecessary deaths of people with learning disabilities became a priority that it was difficult for government or the NHS to ignore. In Justice for Laughing Boy, Ryan, when recounting Connor’s life and the struggles he and the family had in achieving even a decent level of support and services, noted that there had, at times, been “pockets of brilliance amidst the mediocrity”.
It was these that would provide the inspiration for her second book, published this year – Love, Learning Disabilities and Pockets of Brilliance. This is another firecracker of a production, but a very different book from the first. As Ryan writes: “This is a book that aims to celebrate and underline the humanity of people, and to share experiences of what good care and support can look like for families, learning disabled children and adults.”
Pockets of Brilliance tries to capture the outstanding features of organisations, initiatives and services that can make a critical difference at the various stages in the life of a person with a learning disability. The results that such good practice can achieve really are critical – they can make the difference between a good life well lived and a sad life of mediocrity (or, as Ryan knows only too well, worse).
The book is a chronological journey beginning with diagnosis and babyhood, through childhood, the teenage years, parenting, the transition to adulthood and, finally, growing older. This is not a textbook telling people how everything should be done but more of a repository of good ideas, imaginative thinking and creativity that will inspire others, hopefully, to think in a similarly open and flexible way, and to come up with new thinking in contrast to the tired old bureaucratic responses that characterise much professional thinking.
Risk assessed out of a real life
Ryan highlights initiatives such as Supported Loving and Stay Up Late (from which came Gig Buddies) as examples of how people can be enabled to live full lives, rather than inhabit bleak worlds where they are risk assessed out of the warmth of human relationships and denied the simple pleasure of a night out by the constraints of being a “service user”. Her conversations with older carers who have spent their lives loving and caring for their disabled sons and daughters, often in the face of unhelpful interventions (or non-interventions), are deeply moving, sometimes hopeful and sometimes very sad.
There are examples throughout of professionals who have been different, listened and then used their expertise to make things better. What seems to unite them is a willingness to show some humility, to learn, to acknowledge and absorb the experience and expertise of family carers, and to apply all this in their professional practice. Sometimes a casual word of respect, empathy or kindness from a professional can stay with people for the rest of their lives.
Pockets of Brilliance is also full of Ryan’s insights from her own experience. One of her pieces of advice to professionals is simple: “Call parents by their names.” She refers to the practice of calling parents “mum” or “dad”, a casual, probably well-intentioned way of talking, which serves only to strip people even more of an identity already at risk of erasure because of their status as the beleaguered parent of a “problem child”. I am indebted to Ryan for pointing out something I should have worked out many years ago but never did – the tyranny of school transport. This does not just mean that someone has to be at home in the early afternoon to await the arrival of their child, but that “there is no asking another parent to pick up your child from school if you get held up in a meeting”; the camaraderie and mutual support that other parents can share at the school gates is simply not there.
Most of all, Ryan pleads that a disabled child or adult should not be seen as a tragedy and a blight on the lives of their parents and siblings. The lives of such families are often characterised by pragmatic adaptation, love and laughter – yes, laughter. Professionals need to understand and learn that. Any parent who has lost a child, and I am unfortunately included in that select group, will tell you that the temptation to retreat from life after such a loss can be overwhelming. You wish to do nothing more than lick your wounds, embrace your grief and put up the shutters against the world that has dealt you such a cruel blow.
It is a mark of Sara Ryan’s generosity, empathy and strength of spirit that she has chosen instead to give us these two superb books, which offer a message of hope and resilience in the face of devastating loss.
Sara Ryan’s two books are: Justice for Laughing Boy: Connor Sparrowhawk – a Death by Indifference , published by Jessica Kingsley, 2018; and Love, Learning Disabilities and Pockets of Brilliance: How Practitioners Can Make a Difference to the Lives of Children, Families and Adults, published by Jessica Kingsley, 2021