When Séamus Mooney was born with Down syndrome in 1946, he wasn’t expected to live much beyond the age of 10.
“Down syndrome was a real taboo subject back then,” says Michelle Coughlan, his niece. He was the second eldest of five children raised by Bridie and Michael Mooney in Ogonnelloe, Co Clare, and locals would refer to the family as having “one of them”.
Now aged 76, Séamus is believed to be the oldest person with Down syndrome in the State. At least, inquiries put out through the branch network of Down Syndrome Ireland have so far failed to locate anybody older.
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Séamus’s lifetime spans the radical shift in societal attitudes to, and care of, people with an intellectual disability. He was only about five or six, says Michelle, when some neighbours said they would take him to Dublin to see if they could get him “fixed”. His mother used to recount how, the night he came back, she went to kiss him goodnight in bed and he put his hands over his head, as if something bad had happened when he was away.
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“She swore from that day she would never let him out of her sight again, and she never did,” says Michelle. “She always felt as if the world and society weren’t ready for Séamus, and until they were ready she was going to mind him.”
In the latter stages of Bridie’s life, she and Seamus used to spend the winter in Michelle’s family home — Michelle’s mother, Mary, is Séamus’s only sister — but would return to their cottage for the summer. In her early teenage years, Michelle took on the role of being “Séamus’s protector and advocate”. Her grandmother, she says, had passed on the importance of minding him and wanting the best for him — “even though her idea of minding him was keeping him at home, which was the right thing to do, because society wasn’t ready for Séamus. She was decades ahead. He went nowhere. When she went to Mass he went to bed.”
As a result, Séamus was very anxious as an adult about going out to any social events. But, over the years, says Michelle, she and the family have socialised him into being part of the community, and he soon became a party lover. “I just wanted to show Séamus off to the world, because I thought he was fabulous,” says Michelle. He does not have good verbal skills but has a “priceless” ability to swear, despite his childlike sense of innocence, with a passion for toys, Lego and Santa Claus.
When Bridie died, in 2001 — she was in her 90s — a traditional wake was held at home. “We brought Séamus up to the coffin to say goodbye to her, and he just said ‘Birdie’ and leaned into the coffin and gave her a little kiss goodbye. It was the most moving thing ever,” says Michelle, who was aware that other family members wondered what she was doing and how Séamus would understand the concept of death.
But afterwards there was a sense of, “Wow, that was the right thing to do,” she says, “because it created that level of closure. I think for me that was where I felt very strongly that you never underestimate what Séamus can or can’t do.”
Her grandmother had made the family promise that they would never take Séamus anywhere while she was alive. But once he was living permanently with Mary and her husband, Patrick Fitzgerald, the family felt that Séamus, who was by then in his 50s, needed services and a different quality of life, rather than just sitting at home playing with Lego and greeting cards. Michelle and her siblings were leaving home, and their parents were going to be left alone with him.
They introduced him to a Brothers of Charity retirement group for one hour, then two hours, and gradually that was increased to a couple of days. He went swimming for the first time, and Michelle, who was waiting in the pool to support him, says when he was lifted in with a hoist “he roared the place down”. But he soon got to love it.
He also started going to the pub for a drop of brandy and attending social dances. “He was full of the joys of life. He went around with a rollator to help him walk, which he called his bike.”
Séamus continued to live with Michelle’s parents until the first Covid lockdown, when the Brothers of Charity offered them a few weeks’ respite for Séamus at their Castletroy residential centre. He has remained in full-time care there ever since.
“He adjusted and adapted incredibly,” says Michelle, who had been looking for a residential place for him before the pandemic. Her parents are in their 70s, and she knew she herself wasn’t going to be able to look after him long-term, particularly after he started having to use a wheelchair. Her parents are reassured that he is happy in the residential centre, where they visit him regularly. Séamus rules the roost in there, says Michelle. “They adore him, and we have been so blessed that the services are able to look after him.”
When Séamus was due to celebrate his first birthday away from the family, during the pandemic, Michelle contacted the Limerick branch of Down Syndrome Ireland for the first time, having known nothing about the organisation up to that point. The organisation put up a Facebook post with his story, inviting people to wish him a happy birthday. The response from both friends and strangers in the community was phenomenal, they say.
“It was the first time we had exposed Séamus outside the comfort zone of family and services,” Michelle says. But it opened the doors for him, and the rest of the family, to the wider Down-syndrome community.
“There was instant connection,” she says. “He has found his place in the world — that is what Down Syndrome Limerick has done for us.”
It has always been a delicate balance between protecting Séamus, because he’s vulnerable, and looking at what he should be allowed to do as an adult. While family members invited him to parties and to all their weddings, “I think it was Down Syndrome Limerick who celebrated him for his individuality,” says Michelle, in advance of this year’s Tour de Munster, between August 4th and 7th, when 150 amateur cyclists will ride 600km across the province to raise funds for six branches of the charity.
Séamus has set a bar for positive ageing in the Down-syndrome community, and he’ll always be a hero to her. “I think I have made it my life goal,” Michelle says, “to let people know that you’re missing a wonderful opportunity by not knowing anybody with Down syndrome.”
