John MacNeil had a difficult path ahead of him from birth, one that seemed to end with him ending up behind bars.
The co-founder of L’Arche Homefires began life in Cape Breton, NS, in 1956. He had Down syndrome at a time when doctors often advised parents to place such children in a large home for the rest of their lives. People with Down syndrome were not expected to survive their 20s.
His parents, John Angus and Elizabeth MacNeil, decided to keep their son at home. They made the same decision 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 separated him from his sister and placed MacNeil in a facility called Mountain View Home, formerly called County Poor Farm, in Waterville, NS.
Jeff Moore was a social worker who met MacNeil at the facility in the 1970s. He found the young man living behind locked doors in desolate conditions.
“John was such a wonderful and gentle man. It made no sense to literally lock him away in such a dark, noisy and desolate place,” says Moore, who remained close to him until MacNeil’s death earlier this year.
MacNeil spoke few words and never talked about what those years were like for him. “It was obviously traumatic for him to lose his parents at such a young age, to be separated from his sister and then to 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 over 20 years at L’Arche Homefires. She says he was afraid of doctors and medical personnel.
“The thought of having to go to the emergency room was a huge shock to John. This is an indication that he probably had some very difficult experiences in his early years,” says Edmonds.
In 1976, the government closed the Mountain View Home, and MacNeil was shuffled between various smaller care facilities. He met another young man with Down syndrome, Keith Strong, and the two formed a lifelong bond.
A bearded John MacNeil sits with Keith Strong (centre) and Jeff Moore in the early 1980s. (Sent by L’Arche Homefires)
“Keith was like John’s older brother and he took care of John,” says Moore, who worked as a guard 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 facility? Inspired, the Moores, Strong and MacNeil founded L’Arche Homefires in Wolfville, NS, in 1981. L’Arche is an international network of communities founded in 1964 with the idea of supporting people with intellectual disabilities.
“With Keith’s indomitable spirit and John’s Irish charm, we couldn’t have chosen two better co-founders. They were leaders, each in their own way, and built great lives for themselves and many, many others,” says Jeff Moore.
Strong died in 2018. MacNeil died in April, leaving behind a thriving community that now includes dozens of people in several homes and workshops throughout Wolfville.
“He was a community man,” says Edmonds. “John wanted to be around people. 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 up, drinking beer and dancing with friends.
For many years he worked in Applewicks, the community candle shop. “He had this great will to work, but he also liked to put his feet up and stretch,” says Edmonds, laughing. “The music always had to be loud.”
John MacNeil loved Cape Breton music throughout his life and often played it or danced to it. (Devon Edmonds)
He loved recycling and offered to help Edmonds shred office paper. She says he was soon “accidentally” blocking it, so work could be stopped and a conversation started. “If you had a chance to look into his blue eyes, my goodness, they were staring into your soul. And you would see that little bit of mischief.”
L’Arche often has new summer workers from all over the world, and MacNeil loved to take them on long walks around town to get to know his friends. He would greet his friends with a warm handshake and strong eye contact, then turn around, smiling, and silently invite his two friends to meet him.
Clementina Phiri lived with MacNeil and cared for him in his later years. She says MacNeil often expressed his feelings through art, and she learned to recognize a difficult period or impending illness by the darkening of his palette.
“When John got dementia, I became his best friend. He made me say, ‘We’re going to fight this together,’ and we did,” she says. “It was just incredible. He helped me become who I am today. He’s still a friend even though he’s gone.”
In his final years, MacNeil was silent and rarely left his house. But Rose saw the effect he had on visitors.
When words were not enough, John MacNeil often expressed himself through art. (Devon Edmonds)
“It was like I was with Buddha for eight hours a day because he didn’t say a word. I would put music on the TV – bamboo flute music – so people would come into the room and I would watch them melt,” says Rose.
Friends came into his room, full of everyday problems, and encountered his kind eyes, his radiant smile, and his deep silence. Rose watched as people sat with him for an hour, holding hands and occasionally smiling.
“I saw how different they were when they left. Because he wasn’t doing anything anymore, he was just there. He allowed other people to just let go of whatever they were holding onto that day, and they were just there with John. Every traditional community has a village healer. I think John was our village healer.”
“How far this little candle casts its rays”
Edmonds has seen countless wallflowers receive the same gift at community dances over the years. “John would take your hand and it didn’t matter what moves you made. Sometimes there would be a little competition to see who would get to dance with John because he made you so relaxed.”
Phiri was with MacNeil on his last day.
“He looked at me most of the day. I went over and whispered to him, ‘John, you know what? It’s OK. You fought your battles and I know you’re going to die a happy man. I’m going to be OK. And everyone in the community is going to be OK.’ Within minutes, John was gone. He died a happy man.”
Rose says the life and death of his beloved friend reminded him of some of his favorite lines from William Shakespeare: “How far this little candle throws its rays! So shines a good deed in an evil world.”
“I immediately think of John. He was small in stature – he probably came up to my chest – but how far his presence, his light, reached. While he was alive, but also after he died; I think of John as a small candle with a big light.”
John MacNeil was 68 years old.
John MacNeil and Keith Strong shake hands while their friend Ingrid Blais looks on. (Sent by L’Arche Homefires)
More top stories
