Roma Griffin knew exactly who she was.
She was a woman of Sudbury, a daughter of Gatchell, independent, self-possessed, and holding within her a capacity to understand human emotion that made those who knew her marvel.
At first glance, some may have reduced her based on her disability, deciding that her Down's syndrome meant that she was not a complex person, full of hopes and dreams.
But you couldn’t think that once you met her, her brother Ron Griffin told Sudbury.com.
Roma Griffin was a foodie, a connoisseur of hot dogs, great beer and any chance to sing the Irish Rovers’ “Wasn’t That a Party.” She had a belly laugh that her friends at L’Arche Sudbury, the place she called home since she was 26 years old, said was incredible, that you couldn’t be witness to without laughing yourself.
The true Roma Griffin, the woman she knew herself to be, was independent, self-assured, feisty, funny, and more than anything, someone who possessed a compassion and empathy that the world has now lost, to its great detriment.
In all her relationships, there was a depth of love based on both empathy, but also, intuition. Roma could read emotions like others read books, and could tell if you were sad before you even knew yourself.
“She could read people like crazy,” said Griffin. “She had an incredible sense of reading emotion. She would verbalize it and the person would be shocked, like ‘how did you know’?”
Griffin was born in 1956, at a time when many had no understanding of what Down’s syndrome is, or what life someone with an intellectual disability could create or enjoy. Griffin’s brother Ron, oldest of the siblings who was 16 when she was born, said the diagnosis was hard on the family and that he, his father and mother and his two other sisters, did struggle with it at first, but because many hands make light work, the family came together in Roma’s care.
As a child, Griffin would chase sunbeams across the floor, giggling as her fingers rippled and dabbled the light. Though it would be an early indicator that she was visually impaired, something she was born with that no doctor had yet noticed, it was also an indicator of her personality. Her ability to chase sunbeams in her life, and when needed, shine the sun's rays on others.
She was independent, and expected others to respect her as an adult. One instance is the first time that Roma was on her own, away from her mother who was recovering from illness.
The first portion of the trip had not gone well, with the 16-year-old cousin of Roma’s dictating orders to the 22-year-old Roma, rather than asking what she wanted to do.
The family gently reminded the girl of her age in comparison to Roma and pointed out that perhaps, despite her disability, she didn’t take so kindly to being treated like a child, especially by someone younger.
“It was just that assertion that I'm an adult and no kid is going to tell me what to do,” said Griffin.
Roma Griffin knew exactly who she was, it just took the rest of the world some time to figure it out.
That trip would be the first time that Roma was as independent as her spirit, and would lead to her time as a founding member of L’Arche Sudbury. Roma joined in 1982 as the first ‘core member’ to call the place home.
L’Arche Sudbury is an agency that cares for people with disabilities, based on a community model that humans are best able to develop their abilities and talents when given the opportunity to form mutual relationships of friendship with others. They created homes for those with intellectual or developmental disabilities that allow people like Roma to fully embrace every part of her, to make friends, to develop relationships, attend events and even sway the day away in her favourite rocking chair.
There is a change to language, as persons with disabilities are called ‘core members’, rather than clients or patients. Those who provide assistance to core members in the homes are called ‘assistants’, rather than staff, employees or counselors. Assistants and core members live together in homes or apartments in the same way that a family would live together,
relationships based on friendship are considered to be as important as professional
relationships in promoting the personal growth of persons with disabilities
and everyone in the home, core members and assistants alike, is considered to be equally responsible for the life of the community.
This is where Roma found her home, her independence. She found herself at L’Arche Sudbury, and in turn, became a testament to what the organization had always hoped it could achieve.
This new life is where she also found the strength — or perhaps gumption — to begin referring to her parents as “Mr. and Mrs. Griffin.”
“Roma seemed to grasp what L’Arche meant for her almost instantaneously,” said Griffin. “She was no longer a child in the Griffin household; she was a person in her own right, in her own household, the L’Arche household.”
The empty nest is a struggle for every parent, not the least of which when you worry for a child you never thought would be independent from you. When Roma was born, her parents were told she wouldn’t live past 12. But that independence is what every parent wants, even if it hurts. A child’s independence can often feel like abandonment.
“Within a short time, however, our mother came to realize that this was but one expression of
the many that were to come that said that the L’Arche experience was for Roma all she had prayed for and more.” Roma was now her own person, and flourishing.
In fact, their home in Gatchell ceased being home to Roma, and soon, when she said ‘Home,’ she meant Emmaus, one of L’Arche Sudbury’s first housing units. Though it was painful for Mrs. Griffin at first, her son said she soon realized that Emmaus was the home her daughter made for herself, the one she would love, and need, long after her caregiver mother had passed.
Roma began to make decisions for herself, based on guidance and information given to her by the assistants at L’Arche. For everyone who has ever struck out on their own, you know those first few strikes at independence can be exhilarating.
Griffin said he would absolutely marvel at her at times.
“I don't know whether you've caught this,” he told Sudbury.com, “but she was a gal who knew who she was, put together, an incredible capacity. Her grasp of her humanity, of the humanity of others.
“However she was challenged,” said Griffin, “that capacity to understand that she is an authentic, legitimate person? She had it, she had it in spades.”
Though Roma had been struggling with several health issues in the last few months, including early onset dementia, Griffin said the family was grateful for every minute they had with her, especially as a child who was never meant to grace the earth for very long.
Sadly, Roma contracted COVID-19, and died a few days later on Jan. 14, 2022, when the virus moved to her lungs. She didn’t suffer long, thankfully, and she will leave behind her a legacy of love, empathy, compassion and deep intuition. That and what is perfectly described as “Wasn’t that a party.”
Lifestory is a monthly Sudbury.com series in which we pay tribute to lives well-lived of Sudburians who have recently passed on. If you would like to submit the name of a person to be featured in Lifestory, please email [email protected] and tell us your story.
