Critical Health and Learning Disabilities by Sara Ryan

Sara Ryan’s new book, Critical Health and Learning Disabilities, came with a trigger warning. This, I gathered, presented an entirely pessimistic vision of the lives of people with learning disabilities, and would be traumatic for anyone who loves or cares for a person like my Joey.  I was prepared for the worst.

It’s perhaps a sign of just how dark the reality is, but also how precise and honest the book is, that I didn’t find it nearly as harrowing as I feared. Those without lived experience might be appalled, but for the rest of us Sara simply describes a world that we recognise all too readily.

At the heart of the book is an exploration of how in four fundamental aspects of human life—healthcare; love and sex; housing and employment; food and eating—people with learning disabilities are consistently denied the same rights and dignities that are extended to (pretty much) everyone else.

People with what we loosely call learning disabilities, she shows, are the ultimate outgroup, an outgroup who the mighty scholar Chris Goodey explains, is ‘excluded even from the idea that outgroups can challenge their own marginalisation.’  They are still, as the psychiatrist Leo Kanner wrote back in 1942, placed in the ‘human waste basket’.  

The result, Sara shows, is an almost universal inability to see them as individuals. Despite the fact that no-one died of a learning disability, their health outcomes are dreadful, largely as a result of the way that medical professionals fail to engage with them. This was shown most starkly in the pandemic, but is also evident in the dysfunctional roll out of annual health checks, and the continuous failure for doctors to diagnose all the other usual ‘natural shocks that flesh is heir to’.  And then of course there are the dreadful long stay units where far too many people with learning disabilities are left to languish in squalor, loneliness and despair.  

The average life expectancy for a man with learning disabilities today is said to be 63 and there are far too many premature and unnecessary deaths. This is vividly shown in the systematic failure to report on the reasons for such deaths accurately with the conclusion too often being a glib ‘of natural causes’ with the simple conclusion ‘nothing to be seen here’.  The very lack of interest speaks volumes of the inability to perceive the victims as human beings.

Crucially, as Sara insists, ‘poor health outcomes among people with learning disabilities should be considered intolerable rather than a given. We remain all too practiced in tolerating them.’

The book then covers the way that people with learning disabilities are so often denied the chance of sexual relationships, live in deeply inappropriate places and are excluded from all the entirely human experience of eating food together. In every case, Sara shows, these problems are created by people who should, and probably do, know that a better, more human way is possible.  It’s certainly what they’d expect for themselves and their families: why on earth do people with cognitive impairments deserve anything less? 

Sara rightly resists the simple structural solutions which so often appear in long delayed and ineffectual reports and policy statements. The problem goes much deeper than simply a lack of training, better regulation or more money. Indeed, she shows how the very same lack of humanity and imagination exists in the impeccably liberal research community, with one academic preposterously wondering whether ‘exercise is valuable to people with learning disabilities’.  

Sara’s subtitle—An Exploration of Erasure and Social Murder—sets out the book’s core intentions.  In Beautiful Lives, I describe the metaphorical oubliette into which people with learning disabilities have so often been cast in the past.  What Sara shows is how the old practices take new forms in the modern world but are a consequence of the same age-old inability to see people with cognitive impairments as human beings.  Erasure is everywhere.

Sara takes the explosive term ‘social murder’ from Friedrich Engels, who argued in 1845 in The Condition of the Working Class in England that when ‘society knowingly places people in such a position that they inevitably meet an unnatural death’,  and ‘yet permits these conditions to continue, it is guilty of social murder’.  Crucially, this is a kind of murder ‘which does not seem what it is, because no man sees the murderer, because the death of the victim seems a natural one, since the offence is more one of omission than of commission. But murder it remains.’  Sara has chosen the term for good reason.

This is an essential book: impassioned but clear, scholarly but readable, challenging but true.  Twelve years after the entirely avoidable death of her son Connor in an NHS run Assessment and Treatment Unit, Sara Ryan is an extraordinarily powerful voice, still challenging us all to be better, and refusing to take no for an answer.

Publication Day

The day that a book goes out into the world is a strange one. In many ways, nothing happens: the book has been printed, advance copies have been circulated, and the only thing that changes is that it is finally available for readers to buy (on audiobook and Kindle too).  Big fancy launches are a thing of the past — even, I’m told, for big fancy authors. I’ll probably drink a glass or two of cheap prosecco tonight, and that’s about it.

So, it’s hard to explain why the publication today of Beautiful Lives: How We Got Learning Disabioities So Wrong means so much to me.

It’s partly because it comes from personal experience.  As most readers of this blog will know, my second son Joey (28) has severe learning disabilities, and being his dad has changed my life in all sorts of ways.. Without him, I probably wouldn’t have campaigned for the rights and dignities of people with learning disabilities for the last decade, and I certainly wouldn’t have got down to writing this book. Beautiful Lives starts with a ‘Letter to Joey’, and ends with a description of his golden smile. It is dedicated to Joey and ‘the Joey team’, and Joey runs right through it. As Hugh Bonneville said: ‘Thank you, Joey, for getting your dad off his arse to write this book.’  

But Joey isn’t the subject of Beautiful Lives. Instead, it’s about the evolution of an idea and the history of a prejudice. It’s about how people with learning disabilities have been perceived and represented in the past, and the way that these misunderstandings and misapprehensions have led to appalling outcomes for a group who have offered the rest of us nothing but love, laughter and kindness in return.  It’s a forgotten history, a painful history in many ways, but also a challenge to many of our most deeply held beliefs — above all the primacy of the intellect in our hierarchy of value.  

Writing the book was challenging. I had to research up on many aspects of social history — culture, science and philosophy — about which I knew little. The experience was like opening a window onto an unknown landscape, an ‘undiscovered country’, in fact. Some of it was shocking, harrowing indeed, but so also was it clarifying, stimulating and liberating. And so today it’s a source of huge joy to be able to share these five long years of work with readers of all kinds.

But today is also a celebration of something else — the many people who helped me get the book over the line. I was overwhelmed by the support shown by so many: friends and family, scholars and historians, campaigners and philosophers, parents and siblings, as well, of course, as learning-disabled people themselves.

They come from all walks of life, with a huge range of expertise. But their generous offers of assistance, along with the collaboration and friendship I felt throughout, spoke to me of much more than mere professional interest, and I was continuously struck by the moral imperative — the laughter and the love, certainly, but also the passion and the rage — that drives so many . They all in their different ways understand what the book tries to show: that people with learning disabilities are the last forgotten minority, the ones who have been ignored, mocked and persecuted by the rest of us, and that the time has come to challenge this dark history of prejudice and say, ‘enough is enough’.

But it’s not sufficient to just write a book, you have to get it out into the world. And here I’m so grateful to my agent, Zoe Ross at United Agents, and the publisher Alex Clarke and his wonderful team at Wildfire: brilliant, kind, professional people, all working together on making this as good as can be.

And so today, as I glow with pride at seeing my book going out into the world, I raise a toast to all the people who care and will continue to care about the things that matter: love, laughter and the dream of equal rights and equal dignities for all.

Joey is toasting you too. 

• Beautiful Lives: How We Got Learning Disabilities So Wrong is available from June 5th from all the usual places, and on Kindle. There’s also an audiobook, read by me.