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Justice for Laughing Boy: Connor Sparrowhawk - A Death by Indifference Paperback – 27 Sep 2017
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This brilliantly written book is so many things. It's a story of love and loss, a story of people dying preventable deaths because our society doesn't care enough, a story of how what started as one family's battle for accountability turned into a social movement. --Dr Jenny Morris OBE, Visiting Professor of Social Work and Social Policy and policy analyst
A truly remarkable book that should never have had to be written, and that should be read by literally anyone who cares about their fellow human being; Sara brings beauty to her narrative, juxtaposed to the brutal ugliness of the subject matter, juxtaposed to the heart wrenching loving memory of a son taken from his family before his time. An emotional roller coaster made even more poignant by reason that the text is so tragically not fictional. --Dr Luke Beardon, Senior Lecturer in Autism, Sheffield Hallam University and author
The heart of this story rises above a narrative of private grief and public failure by offering a powerful eulogy to the sheer force of love, especially the personality and character of Connor Sparrowhawk that helped inspire a social movement for truth, justice and accountability. Everyone committed to accountable public services should read this book and learn from it. --Richard Humphries, Senior Fellow, The King's Fund
This brilliantly written book is so many things. It's a story of love and loss, a story of people dying preventable deaths because our society doesn't care enough, a story of how what started as one family's battle for accountability turned into a social movement. (Dr Jenny Morris OBE, Visiting Professor of Social Work and Social Policy and policy analyst)
Anyone who cares about patient safety and fairness should read this book. It will make you cry, it will make you laugh, it will make you think, and I would be amazed if it did not make you passionate about changing things. (Peter Walsh, Chief Executive, Action against Medical Accidents (AvMA))
The heart of this story rises above a narrative of private grief and public failure by offering a powerful eulogy to the sheer force of love, especially the personality and character of Connor Sparrowhawk that helped inspire a social movement for truth, justice and accountability. Everyone committed to accountable public services should read this book and learn from it. (Richard Humphries, Senior Fellow, The King's Fund)
A salutary lesson on what happens when public services lose their heart and forget that they exist to serve the public and, in particular, be part of addressing the prejudices and disadvantage that are inherent in our society. (Rob Greig CBE, Chief Executive, National Development Team for Inclusion)
The echoes of those who no longer speak... no candy coating, it is what it is; a tragedy born from negligence. To quote: 'At the heart of this story is love'. Love 'mobilised a social movement' and love keeps hope alive. Not a good read, a must read. (Dr Wenn B. Lawson, lecturer and author)
This is, rightly, a book which makes difficult reading for anyone professionally invested in any part of the system - for exactly the same reasons, it should make compulsory reading. (Alex Ruck Keene, barrister, writer and educator, 39 Essex Chambers)
A truly remarkable book that should never have had to be written, and that should be read by literally anyone who cares about their fellow human being; Sara brings beauty to her narrative, juxtaposed to the brutal ugliness of the subject matter, juxtaposed to the heart wrenching loving memory of a son taken from his family before his time. An emotional roller coaster made even more poignant by reason that the text is so tragically not fictional. (Dr Luke Beardon, Senior Lecturer in Autism, Sheffield Hallam University and author)
This is a story that needs to reach as wide an audience as possible. Only then will people such as Connor receive the care and protection they are entitled to. (Gail McKeitch, parent of two sons with autism, one of whom also has epilepsy)
This is a book that should never have needed to be written - young "dudes" like Connor should not die untimely deaths and families should not have to fight for justice. However, it is a book that most definitely needs to be read and used to effect change (Ruth Northway OBE FRCN PFHE, Professor of Learning Disability Nursing, University of South Wales)
This account of a parent's experience brings to light the vital need to really listen, understand and work alongside people with learning disabilities and their families to ensure that care and support is right for them. (Lyn Romeo, Chief Social Worker for Adults)
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Connor becomes gradually enmeshed in a labyrinth of inadequate health and social care that leads with sickening inevitability into a final, fatal, locked chamber. Afterwards, his family find themselves in a further, even grimmer, grimier and more tortuous labyrinth of denial, deceit, politicking and bullying as they seek the evidence and explanations needed for accountability and justice.
What keeps them going is love - love for Connor, love for each other - and by sharing that love through blogging, social media and public engagement, they multiply it. It grows, spreads, comes back to them and goes out again to other 'dudes' and families. A crowdfunded inquest becomes a crowdsourced movement for justice and a crowdpowered determination to make a difference to the lives of people with learning disabilities,
Read it for the story. Read it for the laughs. Read it for the swears (I defy you not to join in at times, however genteel your language normally). Read it to reflect on your own attitudes and actions, personally, professionally and (small-p) politically. Read it to see how 'little' people, working together, can shake the Olympian heights. Above all, read it for Connor and all the disregarded, unnoticed people.
The book celebrates the life of LB as a vibrant young man who should be into his twenties now, taking up the work he had applied for as a groundsman, continuing to explore the workings of the transport system and enjoying more happy holidays with his family. The anecdotes made me laugh out loud a number of times!
It is also the story of.his cruel death and how his family, friends and a dedicated team of good people who cared exposed the neglect that had led to it. LB is the real hero of the book and as a society we failed him.
We also failed the hundreds of other learning disabled people who the book shows died early and without appropriate investigations into their deaths. He and all learning disabled people deserved and deserve so much more.
Then the sheer devastation of the death of Connor hits you. Connor’s mother, Sara Ryan, describes the emotions and practicalities of loss in a way that many who have lost someone so close will relate to in some way. Whereas for many of us, a death is the start of a grieving ‘process’, which is messy by nature, for this family, this mess was compounded in an astonishing way by the manner of Connor’s death and the reaction and behaviour of the facility and Foundation Trust that was supposed to be looking after him. What one might think of as ordinary and routine in the circumstances (e.g., a proper post-mortem) turns out to be ordinary and routine for people without learning disabilities.
Much neglect comes to light. The neglect of gifts, passions, wholeness, personhood. The neglect of care, service, facility. The neglect of human rights. Contrition, decency, genuine remorse, learning and justice are what might be expected here. And this would likely have taken the course of subsequent events in an entirely different direction. But instead, mother blame appears. This is a theme that continues throughout the book.
The #JusticeforLB campaign emerges in response to the injustice faced. ‘Movement’ is an oft’ misused word, but here it fits properly. Teamwork - in person and via social media - brought about some truly remarkable things, including #107days where people contributed something to the campaign for 107 days, and a Bill (#LBBill).
Still, ‘dyscomnunication’, extraordinary cruelty, collision, and power wielding continues. The ‘family’ (in a very extended sense) go through extraordinary steps to get some answers, and justice, via a number of routes.
The book is honest, heartfelt and very well-written. It raises many questions, which ought to be asked and discussed in all parts of society and especially in health and social care and government. For me, these concern two key themes. First, who do we value and see as truly human? Second, how can institutions and professionals within them be more human? These are two sides of a coin that is seemingly paradoxical. But the glimpses of Connor, in memories, objects, and quite extraordinary feats in his memory, suggest that humanness - at its best - is found in those who are too often deemed to be ‘less than’.
Readers get a glimpse of the behind the scenes struggles and the dirty cover up tactics that face a family trying to get answers and accountability for their loved one’s death. Readers are also introduced to the fabulous JusticeforLB’ers, an inclusive group of all comers, who have pulled together to support the campaign to get answers and accountability. You’d expect Justice for Laughing Boy to be a depressing read, but it is a measured account, harrowing and devastating yes but also hopeful and honest and full of love and laughter.
This book should never have been written but it stands as a beautiful testament to a remarkable young man and a truly amazing family whose love for each other outshines all the murkiness thrown at them.
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