“RUNNING when your legs have never worked is the most indescribable feeling of freedom,” Jonathan Bryan declares in “The Forever Garden”.
He wrote the story in 2016, aged ten, in an attempt to put into words a dream he had had after becoming seriously ill — an experience which others might describe as a brush with death, but which he cherishes as a taste of heaven. “Deciding to return was the most difficult decision of my life, but one day I will live in Jesus’ garden forever,” the story concludes.
Sitting in his mother’s lap, in the kitchen of the rectory in a small village in Wiltshire, he tells me that Jesus’s garden is “the place I have been most alive”.
Her son’s excitement about “going home” prompts conflicting emotions in Jonathan’s mother, Chantal. “As a parent, I don’t want him to go; but, actually, a parent wants what’s best for their child,” she reflects. “It’s for us to help him to live life in all its fullness here, but it’s not for us to hold on so tightly that it gets to the point where he needs to go, and we can’t let him.”
Jonathan was “quite cross”, she recalls, when he recovered after being so ill. “He’s kind of tasted the other side, and, when you are trapped in a body like this . . . and you have actually tasted the idea of running around and getting to climb a tree — well, I can understand that.”
Jonathan’s body is affected by cerebral palsy, a condition he refers to as “the dragon” in his forthcoming book, Eye Can Write: A memoir of a child’s silent soul emerging, due to be published in July.
He was born by emergency caesarean in 2006, after Mrs Bryan and her husband, the Revd Christopher Bryan, had a car accident. She was 36 weeks pregnant, and, although they walked away, seemingly unharmed, the placenta had become detached. An early MRI scan of Jonathan’s brain was described by the technician as the worst he had ever seen. The Bryans were warned that he might never walk or talk, or even recognise them.
THE extraordinary contrast between this prognosis and Jonathan’s achievements has been described as miraculous; it was documented not only in national newspapers, but in a CBBC documentary, broadcast in February. My Life: Locked-in boy was narrated by his friend, Lewis, because Jonathan cannot speak. He was “unlocked” thanks to a combination of Mrs Bryan’s dogged perseverance — “I knew he was in there”, as she told The Times recently — and a perspex board, held up today by his carer, Pippa.
The method is simple, the practice demanding. Jonathan sits on Mrs Bryan’s lap, opposite his carer. The board contains the letters of the alphabet, grouped into squares. Within each square, each letter has a different colour, and above each square is a colour. Jonathan directs his eyes first to a square and then to a colour, and Pippa taps the corresponding letter, which is then read out by Mrs Bryan. It is painstaking work — a ten-word sentence takes around a minute to spell out — but what emerges is strikingly articulate.
“As adept fingers point, my silent soul emerges,” as Jonathan put it in one poem. Published on his blog, his poetry comprises short, animated stanzas full of alliteration and superlatives and images of forward movement and flight. A recurring motif is the release of trapped things. “Travelling time on the wings of hope,” one poem reads. “Fly my soul. Fly.”
I remember him describing in one article how, during the long locked-in years, he spent time praying. “I don’t think with words, but in colour and drum-beat and emotion,” he explains. “When I pray, I invite Jesus to inhabit my emotions and travel my drum-beats with me. I pray for others by bringing them to Jesus.”
ELSEWHERE, Jonathan has revealed his frustration with the assumptions that are made about people with disabilities. He tells me that he hates the way people talk to disabled children — a method that he calls “Special”. Mrs Bryan reads from his book proofs: “Imagine the voice used to talk to a baby: high pitched, excitable, slightly louder than usual; mix that with a foreigner who doesn’t understand the language, slowly loud and clear with short sentence and no complicated words you are now close to speaking ‘Special’.”
She and Jonathan are both critical of the provision for children who are diagnosed with profound and multiple learning difficulties. In a piece for The Guardian, published last year, he described the “increasingly degrading” curriculum at the special school he attended until the age of seven. It was at this age that Mrs Bryan started taking him home for an hour a day, teaching him to read, write, and do maths. “By Year 5, two years after I started literacy and numeracy lessons, I had caught up with my peers and joined my local primary school full-time,” he wrote in his Guardian testimony.
Their mission now is to change the system for other children with disabilities: the ambitious goal is to ensure that every non-verbal child at a special school is taught to read and write. An online petition for the campaign Teach Us Too has so far gathered more than 240,000 signatures, and has taken Jonathan to the House of Lords, and to a meeting with the then Minister of State for Vulnerable Children and Families. The Bryans are in the process of establishing a charity to take the petition forward.
Its text pulls no punches: “Disabled children with communication issues are not being taught in special schools. They are being babysat! . . . Until this is seen as the abuse it is, nothing will change.”
Today, Mr Bryan, Jonathan’s father, is keen to emphasise that not all children are “locked in”. Cerebal palsy is a “hugely varied condition”, he points out. “I think what I encourage people to do is to try things out. Be open to what their child might be able to do.”
The correct educational provision for children with disabilities is highly contested ground. In 2010, David Cameron described fighting a “hell of a battle” against the closure of his son Ivan’s special school, and promised “a moratorium on the ideologically driven closure of special schools”. Between 2012 and 2016, the percentage of children with special needs who attend specialist schools increased from 5.6 to 8.5 per cent.
Yet parents have also described their battles to secure a place for inclusion, and the latest Ofsted report found that a large proportion lacked confidence in the ability of mainstream schools to meet their children’s needs. But there are signs that the Department for Education is listening to the Bryans’ argument. Last year, it commissioned the Communications Trust to conduct research into the effective teaching of literacy for non-verbal pupils with complex disabilities.
Jonathan’s achievements have attracted some scepticism. In February, a professor of psychology, Dr Christopher French, and the vice-president of the Merseyside Skeptics Society, Michael Marshall, argued in The Guardian that his eloquence and fluency was a “red flag”, suggesting that this communication could be coming “unintentionally” from those helping him.
“Often, good intentions and the deep desire for contact leads the facilitator to spell out the messages themselves without even realising,” they wrote. “It’s hard to ask tough questions when you so badly want something to be true, but it’s even harder to find out that you’ve caused inadvertent harm to vulnerable children, simply because those questions were never asked.”
The piece was based on a central misunderstanding, Mr Bryan says. Jonathan does not use facilitated communication, but eye-pointing, a “well-established communication technique”. Several carers, teachers, and even fellow pupils can use his eye-pointing, and Jonathan’s voice is consistent throughout, he says.
He wonders whether the authors were partly motivated by the family’s openness about their faith, which has not been excised from mainstream press coverage. The CBBC documentary even included an extract of Jonathan’s confirmation, at Malmesbury Abbey (“With Jesus as my Saviour, companion and friend, I have lived my hours here with happiness in my spirit and content calm in my soul”). On Easter Day last year, the poet Ian McMillan read Jonathan’s poem “Jesus’ Beckon”, on Radio 2.
It was during Mr Bryan’s first incumbency, as the Priest-in-Charge of Lechlade, in the Cotswolds, that Jonathan was born. He found himself in the strange position of comforting parishioners about what had happened to his own son. The birth also tapped a well of decades-old grief, Mrs Bryan recalls.
“Awful stories came out, because people often don’t talk about very early baby loss or miscarriages. . . Even our generation aren’t very good about it. But the generations above started opening up about awful things that had happened. The chance to talk about these experiences seemed to be healing — the love and care we received from the church was certainly very healing for us.”
In the days after Jonathan’s birth, and for the first time in her life, Mrs Bryan prayed until she was “spent”, joined by others over the country — strangers, in many instances. “God answered them,” she says. “Jonathan survived, and, OK, he is stuck in a body here that doesn’t work very well, but, actually, what has been transformed out of that is something that none of us would have thought of in the early days. His faith encourages others. . .
“I say now sometimes that he is more healed, in a way, than the rest of us. A lot of people are still trying to find out who they are and what they are, and he is happy with who he is.”
Her own faith has also been transformed, she says. “I nearly did get to a stage of having a real go and saying ‘Why let this baby suffer?’, and I had a really strong image of Jesus on the cross, and God the father above him with these tears just streaming down his face, and God said ‘I know’. . . It just blew me away. I was in a position as a parent where I would have done anything to take the pain away, and yet God the father had let his Son suffer because of his love for us.”
The experience has shaped the ministry of her husband, too. He thinks carefully before explaining how. “My thinking about suffering and the way that God is able to transform difficult situations is something that was, maybe, a bit of a theory, and it has become something which is much more personal — and I suppose I can speak from within that experience, as well.
“And that has helped me have some kind of insights into what it might be like for people dealing with particular tragedies or struggles in their own lives. Not that you immediately jump in with your own experience. . . It’s helped me to get a feel for the long term; that there can be things that God is going to be able to bring out of Jonathan’s accident, and the coping with it that we’ve had.”
His own son’s faith, rooted in a profound experience of the life to come, is both “hugely inspiring” and “challenging”, he explains. “For Jonathan, the prospect of going to be with Christ is such a strong and real thing it totally informs his attitude to death, and getting ill, and everything. That really makes you think about your own attitude.” Jonathan’s account of Jesus’s garden featured Noah — a little boy who attended the Bryans’ church before dying of a brain tumour. Mrs Bryan recalls “the hairs rising”, when he first mentioned this.
Mr Bryan is currently Rector of Gauzebrook, in Wiltshire, a benefice of eight parishes. The Church, both locally and as an institution, has been hugely supportive, he says. “As a priest, it’s a great mistake to think that you can model Christian discipleship by having it outwardly all sorted. Actually, it’s in our brokenness and our need that we can be most a blessing to people as well.”
Jonathan has two younger sisters, Jemima and Susannah, who received letters from other children growing up in vicarages after the CBBC documentary was broadcast. “I believe in Jesus, too!” one little girl wrote.
Jonathan remains a child with serious health needs. A lung infection means that he has to be permanently attached to oxygen, and he takes up to 30 doses of medication a day. He has already had a conversation with a palliative-care specialist about what he wants his end of life to look like. But today, it is time for a science lesson at Malmesbury School, which he joined in September.
When I ask him what his favourite Bible story is, he chooses the story of the paralysed man lowered through the roof to Jesus by his friends.
“For you, is that story about wonderful able-bodied friends?” his mother asks, struck again by the fresh, fascinating way in which her young son sees the world.
Eye Can Write: A memoir of a child’s silent soul emerging will be published by Lagom on 12 July at £12.99 (Church Times Bookshop, £11.69)