The communities are built from units of two, one person with a disability, one person without, interlocking parts of a shared life. In pairs they become family, and in pairs they navigate the world from the shelter of "the ark"-L'Arche, as the concept was named by its French Canadian creator. It's a vision, and a model, for care of the disabled.
L'Arche has no "patients" or "clients." Disabled residents are "core members," the community's reason for being. Their caregivers are "assistants," who will spend five days and nights each week living one-on-one with their partners in a household of about six people. There's no going home at the end of a shift-this is home. And for most of the assistants, this life is also a spiritual calling.
"Disabled people have the power to heal us," says Jean Vanier, 72, who founded L'Arche 37 years ago in Trosly-Breuil, a village north of Paris, and has gone on to start more than 100 other L'Arche communities around the world. The first step, he says, is to break down the social conventions that separate and isolate those with disabilities from those without.
Vanier was in Southern California this month for a retreat that drew L'Arche residents from across the U.S. to see him. For five days, on the campus of Concordia University in Irvine, they gathered with local parents and their developmentally disabled children, college students and others curious to learn more about Vanier's unique creation. The first L'Arche community in this area, he announced, is planned to open in Fullerton next year.
Vanier's vision got international attention in the mid-'80s when Father Henri Nouwen, a Catholic priest whose spiritual self-help books have sold in the millions, settled in a L'Arche community in Ontario, Canada. Nouwen had suffered a nervous collapse from the pressures of worldly success, and his friend Vanier suggested L'Arche as a place he might find relief. Instead of asking the famous author and teacher what he could do for the disabled, Vanier turned the question around, suggesting: "See if there is anything we can offer you."
It is this philosophy, that a closely shared life has gifts for both the "helper" and the "helped," that flows through the world of L'Arche.
Eight people sit in a circle, ready to tell visitors their stories. Some of them can barely speak, others can't walk or coordinate their arm movements. Next to them on both sides are assistants.
"In a typical morning, we help folks shower, get dressed, make some breakfast," says Holly Arndt, who lives and works at Hilltop, one of three houses in the L'Arche community in Tacoma, Wash. Dressed in sandals, with loose curly hair, she is in her mid-20s. She volunteered at L'Arche two years ago, then decided to stay. "Where we live, it looks a lot like a typical house. Especially one where there are kids in school."
She turns to Mark, a man around her age who has physical and mental disabilities and who sits in a wheelchair.
"Why don't you tell what it's like to be a core member," she says. "I don't know about that."
"I get up in the morning and take a little walk."
"Gab, gab, gab." Mark is on stage and he likes it. He works as a volunteer at the Y, handing out towels and talking with girls. Others describe their daily routines, making candles or paper in L'Arche-sponsored workshops, or raising flowers to sell. The group assembled today, the most mobile of those served by L'Arche, includes adults with autism, Down's syndrome and mental disabilities, as well as adults who use wheelchairs because of cerebral palsy and dysphasia, which impairs speech.
A slide show gives glimpses of birthday parties, Christmas morning, a field trip to a nearby farm. Within the circle, someone belches, someone lets out a loud yawn, candy wrappers rattle around the room. When a young mentally disabled woman stands up and rocks in her place, an assistant goes to her, holds her hands and rocks with her. To an outsider, the room feels chaotic, but the participants hardly pay attention.
To qualify as a core member, a person must only have a developmental disability and need an advocate. The most severely disabled, and least able to make a home elsewhere, are the first accepted, and in most cases, core members must be over age 18.
L'Arche assistants, for their part, do not need health-care credentials or even first-aid training, at first. Their primary role is to create homes. "People feel called to this life," says Joan Eads, regional coordinator for the 13 L'Arche communities in the United States. "It is a vocation." Today, Eads is based in Seattle. Earlier, in Victoria, British Columbia, she lived as an assistantin a L'Arche community, then became its director.
To help keep a balance, assistants get two free days each week, a vacation and a spiritual director to talk with about the ups and downs of daily life. Room and board are covered, and they receive a salary of about $500 per month. Seventy-five percent of a typical community's annual budget comes from grants and government funding, the rest from private donations.
"Supper is a big meal," Eads says. "We talk about our day, and over coffee we will pray or have a little reflection around the table. At night, we might go bowling or visit a neighbor."
It would be ordinary to the point of dull, if not for the extraordinary circumstances. The whole idea of L'Arche turns older care systems inside out.
Most core members come to L'Arche after years of living in institutions with as many as 3,000 residents. Eugene, for example, has mental disabilities and had a history of violence that often led him to be kept in restraints at the institution. "The anger that comes of being warehoused, where you don't get nurtured, can come out as violence," Eads says. After 15 years at L'Arche, she adds, Eugene has no more violent outbreaks.
At least 3.5 million people, or 1.2% of the U.S. population, are developmentally disabled, according to a developmental disabilities and assistance bill passed in 1999. Only about 200 of them live in a L'Arche community. More typically, in California, disabled people live in their own homes and receive at-home services, or in a group home where the ratio of staff to "clients" is one to six. (The one-to-one ratio of L'Arche is reserved for the severely disabled.) But in the past two years, government money has been made available to families who take in disabled people, and the family home option is the way of the future in California, Mark Antenucci says. He is a quality assurance director for the Regional Center of Orange County in Santa Ana, one of 21 centers in the state that match health-care service agencies with clients.
"The family model is similar to what exists now at L'Arche," Antenucci says. "People with and without disabilities share a house as peers. It's been very successful. The state is looking to expand in the direction of smaller, more intimate living situations."
Intimacy, and the pull of a spiritual commitment that draws nonhandicapped people into the lives of the disabled, have been hallmarks of the L'Arche approach from the beginning. It was the Beatitudes, a Gospel teaching about a virtuous life, that led Vanier to L'Arche as he sought a new direction after a career as a naval officer. One line in particular, was his guide: "Blessed are the merciful, for they shall obtain mercy."
Vanier came from a religious family. His father, Georges, was Canada's governor-general from 1959 to 1967, and with Vanier's mother, Pauline, was long active in humanitarian efforts. Both have been nominated for sainthood in the Roman Catholic Church. Vanier himself had considered and rejected a life in the priesthood. His spiritual director suggested that he put his beliefs into practice by spending time with the disabled people who lived in a nearby institution. Soon after, he met Raphael Simi and Philippe Seux, two developmentally disabled men about his own age. He had no experience with the handicapped, but he invited them to live with him. He and Simi are still together in Trosly-Breuil, where the L'Arche community today has 400 members and was recently divided into two. Seux is in another nearby community.
"It's not a matter of how many people live together," says Vanier, who is tall with white hair and dashing in his quiet way.
"It can be two or many. It's a matter of how to be a genuine community, with all the joy and pain. L'Arche is not a religious group or a family. What defines us is a sense of belonging that we share."
The work and care that go into creating that sense of belonging are apparent when people gather around big tables for meals during the Irvine retreat. One evening, Brian Kelley wheels in for dinner a core member named Ben. Ben has cerebral palsy, and although his mind functions clearly, he cannot speak. "What he does is roar," Kelley says. "A vacuum-packed lion's roar. He explodes when he's happy."
Kelley has lived with Ben in Portland, Ore., for more than a year. Buzzed red hair, a faded blue T-shirt, narrow as a reed, Kelley has a sparking intensity. Many of the younger assistants at L'Arche communities say that life there tests their boundaries, but that it also teaches them how to get comfortable with their own emotions and feelings. "Handicapped people can be awfully demanding," Kelley says. "They're not afraid to be demanding in ways others would shy away from. But when I'm crying, Ben wants to stay right beside me."
The desire for the support of a L'Arche community is strong among those working to build the first one in Southern California.
"Why do you want to move from where you live?" Doug Harrison asks Kevin, who is picking at his spaghetti. Kevin has developmental disabilities and lives in a group home near Irvine. Harrison spent three months as a L'Arche assistant in Cagliari, Canada, and plans to go back after graduate school.
"Randy," Kevin blurts out. "Mark." The names are enough, but he adds, "they're mean to me." He is in tears. "Can we talk separate?" he asks Harrison. They go off for a walk.
"L'Arche is my vocation," Harrison later explains. His gold hoop earrings, jeans and beard hint at his rebellious streak. "I wanted to do something that offers resistance to certain of the world's values. We're all wounded. If we can learn to live together and do it well, we're doing something right."
He met Kevin at a gathering for friends of L'Arche in Orange County. Disabled people and their families get together every couple of months for a "faith and sharing" meeting and potluck supper. They are working to open the Fullerton L'Arche home-Wavecrest-and already there is a waiting list for the three spots. Harrison calls Kevin one of his best friends and takes him to movies and church.
"The reason why L'Arche is successful," says Dr. David Braddock, head of the Department of Disability and Human Development at the University of Illinois, Chicago, "is that it goes to the core of people living in full equality. Over time, that is healing-for both the core members and the assistants. If you only think of retardation in scientific terms, it doesn't get you very far on the human level. What does help is a spiritual connection to something larger than yourself, and an open mind. L'Arche offers that."
One night during the retreat , 50 or so members of L'Arche form a procession into the school gym. They sit on the bleachers, leaning against each other like longtime friends, as Karen Carr, a speech pathologist who lived in Trosly-Breuil, France, for five years, describes what happened there and how it inspired her to work to start Wavecrest. "My professional training didn't matter," she says. "The questions I heard most often were, 'Will you be here tomorrow?' and 'Do you love me?"'
Listening to Vanier explain to the many disabled people and their families that he understands suffering and explains why it is worthwhile to make outsiders feel welcome, people seemed to expand in their places. Someone is talking with them as equals, describing a challenge they know well. "I want to talk about the difficulty of relationships and the heart of community," he says. "This is the future of humanity. It's about forgiveness."