Justice for Laughing Boy : a book review

If you have tears, prepare to shed them now.  Tears of grief at the loss of a beautiful, vulnerable 18 year old young man, tears of love for his amazing mother, family and friends, and tears of rage about a system that didn’t just let him die through neglect, but consistently refused to take responsibility for his death and for far too long failed to give him and his family justice.

The facts are simple.  On 4th July 2013 an 18 year old young man named Connor Sparrowhawk drowned in a bath of an epileptic seizure in an NHS run residential Short Term Assessment and Treatment Unit called Slade House in Oxfordshire in the Southern Health Region.   Contrary to all best practice he was unsupervised and his death was preventable.  

I never knew Connor but he was, evidently, a remarkable (and strikingly handsome) lad who, like so many people with Learning Disabilities, transformed the lives of everybody who came into contact with him, and gave his large and loving family and friends the incomparable gift of appreciating the true meaning and value of difference.   His nickname was ‘laughing boy’ and in the early chapters of her beautifully written book his mother Dr Sara Ryan gives us the most vivid, entertaining and heartbreaking glimpses of who he was and what he could - and couldn’t - do.

If the story had ended on that terrible day, with an immediate, transparent and effective inquest into what had gone wrong, with clear actions, profound apologies and effective redress from Southern Health, I suspect this book would never have been written.  The howling grief so brilliantly caught by Sara Ryan would have consumed her family and friends, but the tale of humiliation, obstruction, and grotesque bureaucratic obfuscation would never have had to be written.

For while this book captures in heartrending terms the loss of Connor, most of it shows up the terrifying failures of the organisations we all count on to support us and our families in our vulnerability and our weaknesses: the NHS, Social Care, the legal profession and the politicians.  And what Dr Ryan chronicles in unsparing detail is an extraordinary fight for justice (which is still continuing), which led eventually not just to an acceptance of responsibility for Connor’s death (which had initially been declared ‘of natural causes’), but also the uncovering of the neglect faced by thousands of people with learning disabilities right across the sector, especially the vast number of un-investigated deaths of people with learning disabilities in Southern Health as enumerated in the Mazar’s Report (December 2015), set up in response to the LB Campaign.

Sara Ryan is an amazing woman.  Doughty, highly intelligent, quietly spoken but completely committed, she’s evidently the central driving figure in what has become a campaign reaching way beyond the tragedy of her son.   But in doing the most natural thing in the world she has taken the most extraordinary abuse from the powers that be, above all a kind of ‘mother blame’, as if her anger and drive for justice was in some sense complicit in what happened to her son.   Her book is amazingly frank about her own emotions - including, touchingly, moments of guilt - and all the better for being so.

However, as she’s the first person to acknowledge, the Campaign for Laughing Boy (LB) has involved dozens of other people with a huge range of expertise (all given pro bono): legal advice, health experts, care workers, social media, disability activists, and so on, as well as friends and family and a whole range of interested supporters.   One of the most moving moments in the book comes when Sara’s 16 year old son, Tom, (Connor’s younger brother) addressed an Extraordinary Southern Health Board meeting and insisted on an apology from Katrina Percy, the Board’s stubborn Chief Executive.  When one was finally offered, he stood up and said:

"This is the first time I’ve heard an apology and I’ve had to ask for it, and I’m 16 and this is a room full of adults, you know, it’s not easy and I didn’t want to do it.  I’ve had had to do it because you guys haven’t apologised."

Little shows the asymmetry of power between Connor’s supporters and the unresponsive and evasive bureaucracy that they were facing.

The Campaign for LB has been picked up on social media all over the world and inspired others to fight for the rights and opportunities of those with learning disabilities everywhere.   A huge and beautiful quilt was made and shown.    Songs have been written.  Events have been held.  The Campaign for LB flag was flown at Glastonbury.  This remarkable group of fighters for justice -  a real community of friends and activists, it seems - has turned the deadly certainties of the world on its head and deserve all our thanks. 

But the battle is never over.  My second son Joey has some of the same characteristics as Connor - charming, cheeky and funny, but with more profound learning disabilities (he has no speech) and lifelong intractable epilepsy - and I never engage with the Campaign for LB without thinking about him, and the thousands of others who have been spared the horrors faced by Sara Ryan, but who are confronted by a system that for all its aspirational language and soothing words still fails the most vulnerable on a daily basis. 

If we believe that you can judge the health of a society by the way it treats its weakest members, Sara Ryan’s account should make all of us recognise just how much more has to be done for the great ideals of inclusion, diversity and justice to be realised.  Connor, poor Connor, and his devastated family has met with some form of justice.  But the great struggle for all the other ‘dudes’ (and ‘dudettes’) continues.  This astonishingly powerful book helps show us the way.