L’Arche demonstrates that we need care, regardless of our abilities
March 21 is World Down Syndrome Day
Carla Freitag likes to giggle when she brushes her teeth. She enjoys listening to music when she draws and, if the mood strikes, she sets her drawing pencil down and begins to dance.
What Freitag cannot do is talk freely about what she likes and doesn’t like, so when it was time to plan the menu for her 44th birthday party, friend and housemate Hannah Gaunt devised a friendly work-around.
“We sat down with a computer and I showed her pictures. Carla chose hamburgers, French fries and chocolate cake. It was perfect.”
Freitag, who has Down Syndrome, is one of four core members who live in a L’Arche home in southwest Calgary. There, the core members live in a community with three live-in assistants, including Gaunt.
“Carla is largely non-verbal, but I have lived with her for almost a year, basically 24/7. We have our own way of communicating with each other. When people try to thank me for the work I do, I say, ‘No. You don’t understand. It is such a gift to be part of this community.”
The L’Arche Model of Care
L’Arche is an international federation of communities that provide homes and other supports for people with developmental disabilities. Founded in France in 1964, the federation works in 149 communities in 38 countries.
In Alberta, there are five L’Arche homes in Calgary and more in Edmonton and Lethbridge.
L’Arche communities challenge notions “that people with developmental disabilities are simply to be taken care of,” explains Robyn Jackson, leader and executive director of the Calgary community.
“At L’Arche, we acknowledge that we all need care, regardless of our abilities. Our communities provide the space for all of our members to discover and nurture our gifts—and to provide opportunities for people to share those gifts while giving them grace for their limitations.”
“I think L’Arche has been wonderful for Carla,” says her only sibling, Kristin Arcega, a parishioner of St. Michael Catholic Community in Calgary.
“Carla can do many things independently, but she needs help with self-care and life skills. They take wonderful care of her and it’s like a family. They’ve had to change some routines because of COVID, but when they can, they go out to church on Sunday, they have a weekly prayer night, and they make sure Carla has day programs that are unique to her. She goes to an arts program on Monday and bowls on Saturdays.”
“We’ve been nothing but happy with Carla living there,” adds her mom, Ann Freitag. She and her husband David, who passed away in 2016, liked the fact that “there is a spiritual dimension to Carla’s life there. Not everyone is Catholic, but they participate in prayer, and we were grateful that she is able to attend Mass.”
Pre-pandemic, Ann brought her daughter home one weekend a month. While she misses that interaction, L’Arche has devised health protocols that allow Ann to visit her daughter. “Her home is where I am, but L’Arche is her second home.”
World Down Syndrome Day
The United Nations formally recognizes March 21 as World Down Syndrome Day (WDSD). In Canada, people are encouraged to mark the occasion by wearing colourful and mismatched socks. Socks symbolize WDSD because chromosomes are shaped liked socks and people with Down Syndrome are born with an extra chromosome.
In 2021, children with Down Syndrome are commonly integrated into public school classrooms. That wasn’t as easily done in years past “and I remember how hard my parents worked to integrate Carla,” says Arcega.
While most of her education was in Calgary, Carla graduated from high school in Summerland, BC.
Looking back on those days, Ann Freitag says their efforts were worth it and she encourages other parents whose children have special needs to pursue what’s best for their kids. In addition to advocating for inclusion, the Freitags accessed other interventions, including speech and occupational therapists.
“Express your wishes and don’t be afraid to explain why you want this for your child,” says Ann. She remembers how good it was to watch her youngest daughter graduate from high school and share the excitement of another milestone in her graduation cap and gown. More recently, Carla Freitag won the Jane Cameron Award, a national art award.
Today, Hannah Gaunt is working on another milestone with Freitag. Using a program developed for people with Down Syndrome, she’s helping Freitag improve her reading skills. A hearing impairment and limited vocabulary can make Freitag difficult to understand, “but because she reads out loud and I’ve spent so much time with her, I understand what she says. She reads four books independently now. That’s so cool.”
-This story was first published in Faithfully, the digital publication of the Diocese of Calgary