I’d been looking forward to reading this book, and it did not disappoint. Professor Ryan is a social scientist whose son, Connor, had autism, learning disabilities and epilepsy. He died in 2013 whilst an inpatient at a specialist NHS assessment and treatment centre. Her campaign for justice, #JusticeforLB (Connor was known as Laughing Boy), raised awareness and eyebrows around the inequalities and injustices faced by people with learning disabilities or autism.
“…It is back to parenting without a map and with some of the (few) signposts kicked over in the ditch or pointing the wrong way.”
This book describes some of the issues faced by people with learning disabilities (LD) or autism and their families, from birth to end-of-life. It describes the horrendous moments in history that are still all too familiar to us as lived experience today. Yet, it also describes some of the very meaningful and wonderful acts that can make such a positive difference. Some magnificent quotes from people with LD and their families remind the reader that this is not an abstract text, but an account of real lives. The good, the bad, the heartbreaking and the brilliant are shown, along with some great myth-busting.
Some of the pockets of brilliance may surprise readers. They are pretty mundane or, at least, expected as a good standard of care. The fact that parent-carers describe them as brilliant speaks volumes about the inequalities we face daily. One example is particularly moving – a speech and language therapist writes a letter to parents with a comment detailing what a pleasure it was to work with their son.
“Out-of-hours home visits, alternatives to the main waiting room, positioning on the consultation list, additional time, talking carefully through what was going to happen, all contributed to positive encounters.”
Ryan challenges readers to consider a viewpoint a little different to the one commonly taken – disability as a social construct, with services set up to mould individuals to fit societal expectations rather than communities adjusting to accommodate all individuals, whatever their needs. A focus on deficit fails to highlight people’s abilities. Society suffers from ‘inclusion phobia‘ and is disablist, often due to ignorance. She suggests that the first step to overcoming this is recognising that we are all human.
“Parents are constantly trying to prevent the downgrading of children to bundles of burden and toil rather than fully fledged little people.”
She writes with authority, vulnerability and humour. This book made me smile, nod in recognition and, at times, cry. As Mum to a young lady with Down syndrome and autism there was much that resonated – both good experiences and bad. As a clinician, there was also much for me to learn and build into my practice. I particularly liked the “What can you do?” sections, and would have liked more of these although, to be fair, the whole book acts as a guide to professionals in health and social care, whether they regularly work with people with LD or autism, or not. There are many stark truths in this book, which professionals would do well to acknowledge. We need to do better and Ryan not only explains why, but also gives us tools to start on the “how”.