Joey has opened my eyes
Posted on Mon 17 Sep 2012 by Stephen Unwin
This is a personal piece by Stephen Unwin originally commissioned by the Guardian for their Family section.
Some people would say that my second son is stupid. I understand what they mean. But it's a word that I've come to use less casually than most. Just a few days before the opening ceremony for the Paralympic Games, he had a pretty significant birthday. But while most boys would have celebrated turning 16 by tasting the forbidden fruits of adult life and drinking too much cheap cider, Joey blew out the candles on his birthday cake with a giggle of excitement, jumped up and down with pleasure unwrapping the presents he'd been given and went to bed – entirely sober – at 7pm.
Because, you see, Joey is very different from most 16-year-olds. He has profound and multiple learning difficulties. His condition is still undiagnosed, although it's almost certainly the result of a genetic glitch. He's an attractive boy, with a shock of brilliant blond hair and a dazzling smile. But he's very small, sometimes painfully thin and suffers from severe epilepsy. His coordination is poor and he's extremely timid. He's terribly vulnerable and when the epilepsy is bad, he's pitiful. Most significantly, he has very restricted cognitive abilities and only a limited understanding of what is going on around him. He communicates in rudimentary Makaton sign language (and makes noises with a clear commitment to what he wants) but has never uttered a single word: not "mum", not "dad", nothing. What at first was termed "developmental delay" is now quite clearly a profound and serious learning disability.
Joey does learn, by modelling. I once spent the best part of a weekend showing him how to put on a sock (it's counter-intuitive: you have to pull the heel in the opposite direction to get it round the corner). He can write a handful of words: but the great challenge is getting him to understand the relationship between the word and the object.
He's pretty adept with an iPod and watches a handful of Pixar films over and over again ("a gold medallist in repetitive DVD watching", as an uncle of his affectionately quipped). He listens to his four-year-old sister's CDs but loses interest when it's not playing one of his two favourite songs, and can't be tempted to follow the books that we read her.
He loves pulling at willow trees and watching flowing water, and bounces up and down in delight at the sight of a passing train. He's very sociable and quite capable of accosting complete strangers in the park to point out to them the trees, the trains and the water that he loves. And, gloriously, his brother enjoys making him laugh so much that he farts and sometimes wets himself.
He goes to a brilliant special school in Waltham Forest – Whitefield school is the sort of place that restores your faith in society. He attended a mainstream primary school for a few years but the great dream of inclusion requires things that are impossible in a busy state school. Securing the right statement of special educational needs required endless letters, phone calls, lobbying and legal advice – and when it finally came through I tried to imagine what it would be like for a child with less pushy parents (I'm proud to be one for Joey). And the enormous form (thankfully, about to change) required to claim disability living allowance is a masterpiece of bureaucratic hurtfulness. As Joey's parents, it's essential for our sanity to hang on to the positive as much as we can, but to make the self-evident case for support we have to stress how helpless, vulnerable and problematic Joey is on every one of its almost 50 pages.
Many different specialists have seen Joey, but there is a limit to what they can do, and one of the big challenges has been accepting that the medical profession does not have the answers. For the most part, they are careful to take into account his particular problems, but learning difficulties can make hospital appointments a harrowing business: just getting him weighed or taking his blood pressure is traumatic enough, but pinning him down while the anaesthetist at Great Ormond Street hospital held the gas to his face is something I never want to go through again. He had no idea what was going on, and we couldn't explain a magnetic resonance imaging scan in terms that he could possibly understand. For a boy who hardly uses his vocal cords, his screams of terror were heartbreakingly loud: it felt as if I was holding his face under water.
The circle of Joey's life is small: school, home, the park, the occasional holiday and his family. We have to be careful about what he can cope with: we couldn't take up free tickets for the water polo at the Olympics because he can't cope with loud noise and crowds. He's terribly sensitive to other people's moods and gets very upset if anyone around him is cross, even when it's not directed at him. As he's grown older, he's become more emotional and, in moments, swings from extremes of giggling, laughing and cuddling to weeping, thrashing and floor-hugging despair. Being around Joey can be pretty exhausting. He needs very careful handling and many a plan has been scuppered because we expected too much of him.
People sometimes say sympathetically, "Oh, Joey is such a tragedy." In some ways they are right: we all wish that Joey was developing along more normal lines. But it's also counter-productive because it reinforces the negative and does nothing to help relieve that "tragedy". Another reaction is, "Surely something can be done, let's throw money at the problem." Again, well-meaning as this undoubtedly is, it doesn't help anyone, least of all Joey. The fact is, there are no miracle cures for Joey, no simple happy endings: it's the people around him who need to change and the challenge of Joey's disability will be with us all our lives.
Joey has had a huge impact on his large and, frankly, high-achieving family. We've all been through a range of emotions: confusion, denial and despair one moment; optimism, humour and determination the next. Looking after Joey on a day-to-day basis is very hard work – he can't do much for himself, needs dressing and undressing, wears a nappy at night and can't be left alone – and it's important for everyone to get some respite.
But I was so moved watching him jump into the arms of his elder brother, an undergraduate at Cambridge, outside the main gate at King's College: it felt as if the walls between knowledge and ignorance, pomp and simplicity, the elite and the dispossessed might, for a moment, come crashing down.
Our society has a confused attitude to learning disabilities, which are all too often swept under the carpet. Physical disability is much easier to relate to, and it's hard to construct narratives of heroic struggle against the odds for people with learning difficulties. There are no obvious role models, no Stephen Hawking, no Oscar Pistorius and no Stevie Wonder, no high-functioning people with profound learning difficulties made Companions of Honour, winning Paralympic medals or being hailed as musical geniuses. And, despite the tremendous work done by Mencap and others, there are still issues with the way that they are treated by the rest of society. The Papworth Trust recently published research showing that 90% people with learning difficulties have experienced hate crime or bullying, and almost a third say that it takes place on a daily or weekly basis.
I was brought up to value language almost more than anything else and, as a theatre director, it's integral to my work. I'm ashamed to say that as a young man I was completely ignorant of people like Joey and assumed that people as well-educated as me couldn't possibly father children like him. But I think I've learned the hard way that words aren't everything, and by looking into Joey's eyes and watching his behaviour, I've seen something beyond words, something that lies behind the words, something that can't be expressed in words. It's been the single biggest challenge of my life, but also the most rewarding. Because Joey, in all his fragility and his vulnerability, has opened my eyes to the real meaning of difference, to the tyranny of normality, to another way of thinking about human beings.
Joey is what the religious would have called sancta simplicissima, a holy fool. And, yes, he's "stupid", and there is no getting away from that. But the great lesson that he offers – which we all forget at our peril – is that being clever isn't everything. And that nothing is too good for those who cannot help themselves.
This article was originally in the Guardian, Saturday 15 September.