Lessons in love, laughter and telepathy from a teenage boy
We see them at the side of the pitch during football matches – the ones in wheelchairs the cameras usually avoid. Oafish football fans have actually been heard to opine that they shouldn’t be there because they, you know, bring down the mood.
People with disabilities sometimes ‘upset’ the able-bodied, just because the latter have no idea how to deal with their reality. Which is why the title of the Radio 4 series on disability, Does He Take Sugar?, was so inspired, because it reached to the heart of a widespread ignorance – and fear.
Sonny holding the book Sonny: Love with no limit
The writer Guy Kennaway experienced both with the teenage boy who is the subject of this touching book.
When he first met Sonny’s mother, Andrea, he fancied her – an attractive, vivacious, flirty, unconventional female, as ready to have a drink and fun as he was. But by the end of this account of ‘Love with no limit’ (the book’s subtitle), ladies’ man Kennaway sees Sonny’s mother as astonishingly, miraculously strong, admirable and brave. His story of one profoundly disabled boy is an uplifting journey. It is both oddly comical and devastatingly honest.
When Kennaway hears that Andrea, who incidentally is married, is the mother of a severely disabled son, he tells her that he has no idea what to say or do when he meets such people: ‘I don’t know whether to try and talk, to shake their hand, to bend down, or to ignore them and carry on. I don’t even know whether to look at youngsters in wheelchairs when I pass them on the pavement.’
Such candour is impressive. After that conversation he decides that maybe he could write a detailed book about a child unable to respond like any other boy or girl he has ever met. It will be a challenge, but a good subject for a writer… so why not?
But the colossal difficulty of the task he has set himself quickly becomes clear. The lovely Andrea lives with her husband Maff and their four children in Somerset (also Kennaway’s home). Their second child, Sonny, was born with so many chronic physical and mental challenges that there is no exact name for his condition, although it’s commonly summed up as SMD – Severe Multiple Disabilities.
At 14, Sonny is totally paralysed: he cannot talk, he cannot breathe, and he cannot swallow food or liquid. His lungs are suctioned every 15 minutes. If he goes anywhere he has to be accompanied by the wheelchair, a ventilator, battery charger, suction pump, battery and a box of catheters. He is dependent on round-the-clock care to keep him alive.
The task is (frankly) horrendous and the risks horrific. Kennaway realises he is absolutely terrified of the boy who can say and do nothing at all.
It turns out that Sonny and his father Maff are crazy about Liverpool FC and sharing that passion is what provides Kennaway with his first step towards the mystery that is Sonny. Of course, the parents inform him that Sonny ‘loves’ Liverpool, but is that in fact the case?
Sonny with his three siblings and parents
Confidently they tell him that Sonny ‘says’ this and that and responds with enthusiasm to some suggestion or other – when there is in fact no visual evidence at all.
Learning to ‘talk Sonny’ is, Kennaway discovers, just saying things to the boy and then imagining you hear what his reply is, and then carrying on the appropriate one-sided dialogue. Kennaway chats to Sonny about girls and football and fancies he sees a movement of the eyes, or a wrinkling of the forehead by way of ‘replies’. At first, expecting some sort of conversation, he draws a blank. As he tries again and again, his mixture of self-consciousness and bravado is endearing.
But as the narrative continues he becomes afflicted by doubts. Is there a true ‘voice’ inside Sonny, speaking to him through a form of telepathy? Or is he merely projecting his own ‘replies’ on to the child?
As he struggles to understand how his parents, siblings and carers are communicating with Sonny, Kennaway realises that there are many occasions when it is surely impossible for them to know. What if they are all deceiving themselves? What if (whisper it) there is nothing there?
Sonny is available now
In fact, ‘talking Sonny’ is more or less an act of faith. The ‘love with no limit’ of the subtitle begins to work its mysterious magic on the conflicted author. Kennaway feels uneasy about the self-deception he suspects he witnesses in the devoted parents – but also about what feels like his own mean betrayal by doubting what Sonny can, in truth, understand.
Caught in that double bind, the author works towards the all-important insight: it doesn’t really matter what Sonny can or cannot sense – what matters is what he brings out in all those whose very humanity is enhanced in his presence.
This is a story of a teenager who is different – and Liverpool Football Club. A madly brave and scarily foolhardy outing to Anfield bookends the narrative.
It’s about two parents determined to move mountains for their son. It’s about a writer whose subject takes him on an emotional rollercoaster ride, with plenty of laughter and good times along the way.
It confronts you with such love and energy you might question whether you could do the same for your own child. And it compels the reader to interrogate his or her own feelings about profound disability, the right to life, and whether love and blind
faith can ever be separated.