When Manni Coe received a disconcerting text from his brother Reuben, who has Down’s syndrome, he decided to remove him from the care system. Now the two tell their story in a new book.
They were just five words, separated by four tiny full stops and four spaces: “brother. do. you. love. me.” But when, in November 2020, that text from Reuben Coe, who was alone in his room in a care home in Dorset, arrived on the phone of his brother Manni in Andalusia there was little else he could do. Manni had to get him out.
Soon the 48-year-old travel guide was packing his bags, saying an indeterminate goodbye to his partner Jack and flying to Britain on a one-way ticket. He collected Reuben, 38, who has Down’s syndrome, from the home, where he was given a 10% chance of recovering from the terrible toll isolation had taken on him, and took him to a cottage in a village near the Jurassic Coast.
For the next 26 weeks he had one goal in mind – trying to help his brother, who at the time was non-verbal, locked in and depressed, get better. But what materialised was a journey that is still unfolding. The brothers have published a book, featuring Manni’s writing and Reuben’s drawings, they are going on tour around the UK, and Reuben – who Manni believes is now at around 75% of his former self and getting better daily – has a new home.
Sitting in an emerald green chair in the middle of a theatre in south-west London, Reuben is quick to communicate. Showing me a newspaper picture of the Queen lying in state, he softly says: “I miss her.”
On the floor next to him is a blue tote bag, to which he later carefully returns the newspaper, and on his person at all times is a narrow paintbrush, which he sometimes uses to stroke his skin or the chair. He often looks up at the dramatically lit stage, dressed in forest scenery, which instantly reminds him of Jack and the Beanstalk. Before I arrived, they were dancing around the auditorium to Beauty and the Beast, says Manni. Later in the evening, Reuben, who loves theatre, films and musicals, will appear on the stage of the Normansfield Theatre at the Langdon Down Centre in Teddington in front of a room full of people to huge applause.
The book, published this month by Little Toller Books, tells the story of their journey together during Covid and how they wrote and drew their way through one of their biggest ever challenges. Their pictures and words communicate with one another but also express the voices of two interweaving individual lives. It also describes their lives growing up in the Yorkshire Dales, then Berkshire, with their parents in a family of four brothers – a life that “orbited the church”, writes Manni. At one point they lived in the care home that their father ran.
Originally, there was no plan to share their writings and drawings publicly, says Manni. Reuben’s boldly coloured felt-tipped drawings – which include Joseph’s technicoloured dreamcoat, many lions and the lamppost from The Lion, the Witch and the Wardrobe – were a means of expression and communication at a time when words were not available.
“Every night he would do a drawing for me, give me a kiss, whisper ‘night brother’, and then hand it to me upside down, so there was a big reveal,” says Manni. “And that’s how we communicated – he communicated with me through drawing.”
And for Manni, who has always written, it was a form of therapy. “Writing about it gave me hope because I realised that there was a narrative and I wanted it to be a happy ending,” he says, his voice cracking with emotion. “So if I was writing it, it was giving me inspiration that we could push this through to a happy ending.”
Their six-week tour, which will take them around bookshops and festivals around England and Wales, will culminate at Hay festival with Sally Phillips interviewing them, after Manni approached the actor in a chance encounter at a restaurant. The first thing Reuben plans to say to her is her Miranda catchphrase “bear with”.
How does it feel to be sharing such an intensely personal journey? “We’re still getting used to it, because we’ve lived a very quiet last year,” says Manni. “It does feel as if we’re taking it outside. So it was a very private thing and now it becomes very public.”
Reuben is clear about why they’re doing it. “Help people,” he says.
Manni adds: “We think we can. We think that what we’ve lived through will help other people.” They have already had people who have read the book get in touch. “It’s a story that so many connect with,” says Manni. “Not just people who have someone in the family with Down’s syndrome or a sibling, but anybody who was isolated in lockdown – and we were many. Covid hasn’t gone away. Some people are still living it.”
Before September 2018, when Reuben lived with his brother and his partner in Spain , he was “chatty Cathy”, says Manni. “Always the life and soul of the party.” He didn’t use many full sentences but he was a skilled communicator.
He clinically regressed, then improved, before regressing massively when he was admitted to a care home in February 2020. Family Zooms made everybody feel further away, not closer. A picture taken during lockdown of Reuben shows him gazing from his bedroom window, one hand against the glass.
Manni spent nearly two months visiting him every day over the summer but returned to Spain with “huge doubts”. It was only a November selfie, of Reuben roaring like a lion, that gave him any hope. “It was a defining moment. That’s when I saw that he was ready to fight and that he’d found courage.” Soon after that came the text – brother. do. you. love. me. – which would inspire the title of their book.
The text was not a question, says Manni, it was a prompt. “That was Reuben’s way of saying ‘come and get me out of here. If you love me then show me the colour of your love’. Is that what you meant Reubs?” Reuben raises his finger in agreement. The colour of their love is probably a red rainbow, he says.
But when Manni went to collect him from the care home, Reuben was not in a good way. “When I got him out of the home he was totally nonverbal. And that’s how the drawing happened. He was communicating by drawing.”
They started going for walks, gradually increasing the distance, and Reuben saw a therapist, who joined their Covid bubble. “She came to the house once a week and started helping Reuben on the physical recovery as well, because he had muscle wastage and was really weak as he hadn’t gone anywhere for months,” says Manni. “And she started working on his expression.”
On Fridays they would put on musicals and stage them live on Instagram. And one day Manni decided to pretend it was Christmas, complete with a tree and decorations. The therapist came with music from his favourite films – Lord of the Rings, Mary Poppins, Chitty Chitty Bang Bang – and started doing dances with her fingers which Reuben would shadow.Another central element of life that Reuben had been missing was touch. “No one really touched him for months, and that’s where the paintbrush came from, for sensation. It’s quite heartbreaking,” says Manni.
Describing their first hug when they were reunited, Manni says it was “just amazing”. He says that Reuben told him afterwards: “I needed that” – to which Reuben raises his finger to show me he is in agreement.
This is not the first time Manni has had to take Reuben out of care. The first was a few years ago when he was sent for a visit to Spain dressed in his pyjamas. “We called it Dirty Sheets,” he says. “And Reubs was obese, massively overweight. You weren’t in a good place, were you Reubs?”
Their experiences have shown Manni that care homes are only as good as the people working in them. “The two negative experiences we had, it was all down to staffing problems, lack of staff, not enough people for too many tenants,” he says. Of the first home he had to take Reuben out of, he adds: “They were looking after him but they weren’t caring for him. There’s a big difference, I think.” Caring, he believes, should be a well-paid career. “It’s a special gift, and so many people who are gifted carers have to move on simply because they can’t make it work financially.”
When Reuben was ready for a more independent life, Manni and Jack strongly considered inviting him to live with them again, but felt the best option was for him to be somewhere he could create his own community.
They found him a place at a newly built home in Dorset, where there are no communal areas or corridors but individual private spaces that residents can invite each other into. Reuben has his own tenancy agreement, and is encouraged to be as independent as possible. After a period of transition, Manni returned to his life in Spain.
Saying goodbye after their time in the cottage together was desperately painful. But now Reuben says he feels at home there. In a list of “good things” he compiled before moving in, he wrote: “Am home now.” Manni is working on his next book, a prequel to this one, about when they bought the home in Spain.
Manni and Reuben often re-enact a scene from The Color Purple, one of their favourite films, where two sisters who have been separated are reunited in a field of purple flowers. Having come together again to embark on their tour, Reuben gave Manni a picture of a lavender field. “It was the reunion of two siblings.”
By: Miranda Byrant – The Guardian