Every parent of a learning-disabled or autistic child is different. What unites us, however, is the experience of fighting for our child’s inalienable human rights and basic dignities. We don’t want special treatment and detest the notion of our children being ‘special’ or having ‘special’ needs. All we want is what we expect for our other children. It shouldn’t be too much to ask.
Sara Ryan—whose wondrous new book, Love, Learning Disabilities and Pockets of Brilliance, is out next month—knows this better than most. In July 2013 her gorgeous 18 year old son, Connor Sparrowhawk, drowned in a bath in an NHS Assessment and Treatment Unit in Oxford. After an exhausting campaign for justice, an Inquest eventually concluded that his death was ‘avoidable’ (he had epilepsy and shouldn’t have been left alone in the bath) and not, as previously claimed, ‘of natural causes.’ But ‘Justice for Laughing Boy’ (#justiceforLB) wasn’t finished and Sara and the many people who worked alongside her didn’t just ensure that those responsible for Connor’s death were named, they showed up a systematic failure to investigate the deaths of hundreds of learning-disabled people and pointed to still broader issues in the way that our society engages and tries to support this very loosely defined group.
Sara described all this in heart-breaking detail in her previous book, Justice for Laughing Boy (2017). And, although she inevitably refers to Connor in her equally important new book, she turns her attention to the way the powers that be—social workers, local authorities, big charities, educationalists, health care professionals and other specialists—interact with learning-disabled and autistic people and their families, and she details the way the system so often ignores the most important point of all: that we’re all human beings with our own individual frailties, emotions, and anxieties, and that those who regard our children as problems to be managed, tragedies to be endured, or defectives who require special treatment, are failing in their most basic duties, and are part of a culture which denies learning-disabled and autistic people the chance of a decent, happy and rewarding life.
Sara’s subtitle is ‘How Practitioners Can Make a Difference to the Lives of Children, Families and Adults’ and it should be compulsory reading for anyone training to work in this field. It would certainly have prevented many moments of grief in my struggles for my learning disabled son, Joey. After a ‘brief historical whizz through’ of the appalling mistreatment of learning disabled and autistic people in the past, Sara shows the way that these attitudes all too often shape contemporary practice. And she itemises with exhaustive, at times exhausting, patience the endless nightmares—both big and little, trivial and catastrophic, institutional and personal—faced by families, especially mothers, in their seemingly endless struggle to secure a decent life for their loved ones. That this bad practice is so wearily familiar should shock society out of its complacency. And the fact, as Sara emphasises, that progress is so eye-wateringly slow should make us all howl with rage.
But—amazingly, beautifully, surprisingly—Sara’s book isn’t just critical, and one of the remarkable things is the way she includes so many examples of best practice, where something little—often just a simple human kindness or an act of imagination—made a huge difference. Many of these were collected in response to Sara’s call on Twitter, and, to my surprise, include my own account of paramedics chatting to my young daughter, Bea, about Harry Potter, even as they loaded Joey—in mid status epilepticus—into an ambulance while managing to keep my soaring anxiety under control. But the point is, these ‘pockets of brilliance,’ as Sara calls them, should become the norm, not the exception. Above all, Sara’s simple and straightforward lessons need to be learnt by the large institutions who are so often Kafkaesque in their bureaucratic obscurity, and chillingly hurtful in their impersonality. The situation will only change when everyone involved understands that the biggest problem faced by families like ours isn’t loving and accepting our slightly ‘different’ children, it’s the endless fights to secure for them the simplest things imaginable.
After Connor’s dreadful death and the hugely challenging campaign that followed, no-one would have blamed Sara if she’d put her feet up. What’s astonishing about her new book is that she’s reached out to a large number of other families for their own, mostly less traumatic but very real, experiences and alerted us all to the all-conquering truth that learning-disabled and autistic people are just as human as the rest of us. I know Sara Ryan a little—Assistant Professor Dr Ryan, as we now must call her!—and I suspect she’ll only relax when the voices of the learning-disabled and the autistic and their families have been heard and acted on.