'He was our village healer': L'Arche Homefires mourns founder John MacNeil

John MacNeil was born facing a hard road that seemed doomed to end with him locked behind bars. 

The co-founder of L'Arche Homefires began his life in Cape Breton, N.S., in 1956. He had Down syndrome at a time when doctors often encouraged parents to place such children in a large institution for the rest of their lives. People with Down syndrome weren't expected to outlive their 20s. 

His parents, John Angus and Elizabeth MacNeil, decided to keep their son at home. They made the same choice for his sister Florence, who also had Down syndrome. But his mother died when he was 10, his father died a year later, and the province split him from his sister and put MacNeil into an institution called Mountain View Home, which was previously called the County Poor Farm, in Waterville, N.S. 

Jeff Moore was a social worker and met MacNeil in the institution in the 1970s. He found the young man living behind locked doors in bleak conditions. 

"John was such a beautiful and gentle person; it made no sense for him to literally be locked away in such a dark, noisy and dreary place," says Moore, who remained close with MacNeil until he died earlier this year.

MacNeil only used a few words, and never shared what those years were like. "Clearly it was traumatizing for him to lose his parents at such a young age, to be separated from his sister, and then spend the next 16 years in an institution," says Robert Rose, who worked closely with MacNeil in his final years. 

Devon Edmonds knew MacNeil for more than 20 years in L'Arche Homefires. She says he showed a fear of doctors and medical professionals. 

"The idea of going to an emergency room was very terrifying for John, which is an indication that in his early years there were likely some very difficult experiences," Edmonds says. 

In 1976, the government closed Mountain View Home and MacNeil was shuffled through a series of smaller care facilities. He met another young man with Down syndrome, Keith Strong, and the two formed a lifelong bond. 

"Keith was like John's older brother and he looked out for John," says Moore, who worked as a supervisor at one of the facilities the two men shared.

Strong approached Moore and his wife, Debra, with a new idea: why not create a real home, rather than just a smaller institution? Inspired, the Moores, Strong and MacNeil founded L'Arche Homefires in Wolfville, N.S., in 1981. L'Arche is an international network of communities founded in 1964 on the idea of celebrating people with intellectual disabilities. 

"With Keith's indomitable spirit and John's Irish charm, we couldn't have picked two better co-founders. They were leaders, each in their own way, and built a great life for themselves and many, many others," Jeff Moore says. 

Strong died in 2018. MacNeil died in April, leaving behind a thriving community that now includes dozens of people in several homes and workshops across Wolfville. 

"He was a man of community," says Edmonds. "John wanted people around him. He wanted to be on the dance floor. He wanted to be at the table and at every party. That Cape Breton spirit was in John."

MacNeil and his sister were reunited before her death in the 1990s. Friends say he loved dressing sharply, drinking beer, and dancing with friends. 

For many years, he worked in Applewicks, the community's candle shop. "He had this great spirit of wanting to work hard, but also would kick his legs up and stretch out," Edmonds says with a laugh. "The music always had to be blaring."

He enjoyed recycling and would offer to help Edmonds shred office paper. She says he'd soon "accidentally" jam it so that work stopped and conversation began. "If you had a chance to look into his blue eyes, my goodness, they stared into your soul. And you'd see that little bit of mischief."

L'Arche often has new summer workers from all over the world and MacNeil loved taking them on long walks through town to meet his friends. He'd greet his pals with a hearty handshake and strong eye contact, then turn, smiling, silently inviting his two friends to meet. 

Clementina Phiri lived with and cared for MacNeil for his later years. She says MacNeil often expressed his emotions through art, and she learned to detect a rough patch or coming illness by the darkening of his palette. 

"When John was hit with dementia, I became his best friend. He made me say, 'We are going to fight this together.' And we did," she says. "It was just so amazing. He helped me become what I am today. He's still a friend, even if he's gone."

In his final years, MacNeil fell silent and rarely left his home. But Rose saw the effect he had on visitors.

"It was sort of like being with Buddha for eight hours a day because he would never say a word. I would always put music on the television — bamboo flute music — so people would enter this room and I would watch them melt," Rose says.

Friends would sweep into his room, full of the ordinary problems of the day, and encounter his kind eyes, bright smile, and deep silence. Rose watched people sit with him for an hour, holding hands, and smiling occasionally. 

"I saw how different they were when they left. Because he wasn't doing anything anymore, he was just present, he allowed other people to just let go of everything they were holding on that day, and they were just present with John. Every traditional community has a village healer. I think John was our village healer."

'How far that little candle throws its beams'

Edmonds saw that same gift given to countless wallflowers over the years of community dances. "John would take your hand, and it didn't matter what moves you made. Sometimes there was a bit of a competition to see who got to dance with John because he put you so at ease."

Phiri was with MacNeil on his final day. 

"He looked at me most of that day. I went to whisper to him, 'John, you know what? It's OK. You've fought your battles and I know you are dying a happy man. I'm going to be fine. And everybody in the community is going to be fine.' Within a few minutes, John was gone. He died a happy man."

Rose says the life and death of his beloved friend brought to mind some of his favourite words from William Shakespeare: "How far that little candle throws its beams! So shines a good deed in a naughty world."

"I immediately think of John. He was short of stature — he probably came up to my chest — but how far his presence, his light, went. While he was alive, but even after he died; I think of John as a little candle with a big light."

John MacNeil was 68.