L’Arche Canada fosters social inclusion of people with developmental disabilities
By KEVIN SPURGAITIS
Janet Munro is surviving longer and has a better quality of life partly due to one thing: a shared life with community-care providers.
As a 44-year-old with Down syndrome, Janet finds she is most happy when volunteering with the L’Arche community for people with developmental disabilities. In particular, she enjoys performing with the Ontario-based dance troupe, Spirit Movers, and putting together information packets together twice weekly for parents whose children were also born with Down syndrome. And whenever she is not working, she likes to prepare tasty dishes for friends and colleagues: pasta and chicken mostly.
“I help with the mailings, make photocopies and work on the computer here,” Janet says softly, meticulously selecting every word. “People are very friendly and I really enjoy their company. I’ve made a lot of friends. . . But oh my goodness … It takes time to learn things. Sometimes I feel nervous and scared. Mostly, I feel happy, though.”
L’Arche is a spiritually based network of residential caregivers, made up of 130 communities in 30 countries. The social justice paradigm, characterized by its workshops or day programs for people with developmental disabilities, has existed in Canada since 1969. L’Arche Canada now has nearly 200 homes in 27 neighbourhoods from Cape Breton to Vancouver Island. As a service organization, it sponsors a “community type” of living, rather than a medical or social service model of care. It promotes “mutuality in relationships and teaches attitudes and skills for creating networks of belonging.”
L’Arche’s core members are people who have been diagnosed with developmental disabilities, such as autism, cerebral palsy (which may include an intellectual incapacity) and Down syndrome. Some members are wheelchair-bound. Some have communication impairments. Then there are those with behavioural and emotional difficulties. Whether they have physical or intellectual disabilities, mild or complex needs, all receive help from aides coping with the demands of their daily lives.
According to the Canadian Association for Community Living (CACL), there are more than one million Canadian children, youth and adults with intellectual disabilities. In 1982, the Charter of Rights and Freedoms gave people with an intellectual disability the same status as every other Canadian. The 1980s also saw provinces and territories adopt human rights codes to help protect the rights of people with intellectual disabilites. Now, Ontario’s three remaining government-operated residences for adults with developmental disabilities are scheduled to close in the next two years. The January announcement followed last year’s court decision by Justice Charles Hackland, which acknowledged the government’s right under existing legislation to close provincial facilities. The ruling says that residents cannot be transferred into group homes or other community facilities without the consent of the individual or their family.
Disability and Inequality
“We are absolutely thrilled about (the announced institutional closures),” says John Guido, the regional coordinator for L’Arche Ontario. “The quality of life for people living in an institution is as low as it can be. Today, it is more of a human place, but people are still isolated from society with little or no choice about what they’re doing in their lives.”
Describing institutions as “warehouses of people with developmental disabilities” and “dumping grounds for unwanted people,” Guido argues that not-so-violent offenders can easily find themselves in segregated wards, based on the whim of a single staff member. He says that patients’ aggressive behaviour may even be warranted if they feel threatened by personnel. It may be their only recourse without any advocates in the system.
“Scary numbers of people with developmental disabilities have been significantly abused, both sexually and physically, by people responsible for their care in institutions or in their own families … There is something terrifying about being human when we victimize the people who are most vulnerable around us.”
He continues, “At L’Arche, we provide a certain level of structure that keeps people safe … but it’s not structure in the way of oppression. It’s beneficial for them to be without rigidity.”
It can be said that L’Arche is a surrogate of sorts, providing a place “to be known and to have emotional intimacy.” As Guido puts it, “They have a chance to be a part of something larger, instead of living depressed, heavily monitored lives.”
Acclaimed as a “nation builder” who inspires the world by the Canadian press, philosopher Jean Vanier is the founder of the international movement of L’Arche communities, named after Noah’s Ark. Vanier once said, “Real peace implies something deeper than polite acceptance of those who are different. It means meeting those who are different, appreciating them and their culture, and creating bonds of friendship with them.”
For his humanitarian work and social vision, he was awarded the Order of Canada, the Legion of Honour (France) and the Pope Paul VI International Prize. Today, Vanier still lives in the first L’Arche community in France, which he continues to exalt in his books. “ …When we let go of our usual categories and the productivity-oriented measuring systems so common in our culture, we can be surprised by the abilities that people with developmental disabilities often reveal — their keen sensitivity to interpersonal situations, the depth of their empathy, their willingness to overlook and to forgive, their faithfulness, their acceptance of difference, their originality, their capacity to be present and to cut through pretense, their resilience, the creativity of what they produce, and their gift for celebration. People with disabilities have taught me what it means to be human and they are leading me into a new vision of society, a more human society.”
It is said that Vanier was one of the first persons to take someone (with development disabilities) from the margins and place them at the centre of towns and cities. He has been called a prophetic voice and a visionary but has still graciously given new community leaders the stick and said, ‘L’Arche is in your hands.’”
L’Arche in the City
In 1974, L’Arche Daybreak in Richmond Hill, Ont. erected its first house off the main property in downtown Toronto. Fives homes and one independent living apartment now constitute L’Arche Toronto. All residences are situated in neighborhoods that reflect the city’s “cultural diversity and rich tapestry.” In each community, four international assistants, routinely supervised by a house leader, service the administrative and special needs of four core members. Assistance is required with getting up in the morning, personal hygiene, dressing, feeding, communicating, housekeeping, laundry, informal health monitoring and going to bed. Emotionally and psychologically propping up L’Arche’s residents, informal caregivers get very little respite.
According to Amy DeMoulin, community leader of L’Arche Toronto, the independence of core members is less important than their ability to be part of society. The hallmarks of L’Arche homes are residents’ zeal and unbridled spirit. Their own pop and impressionist art is proudly hung in already vibrant interiors. At one house, a technicolour field of plush toys can be found out front. At another, taking out the garbage is pageantry, with clamorous bands marching out the front door to tunes like Dick Dyson’s “I Work In The Daytime (She Works At Night).”
“L’Arche is an environment where you can become who you are at your core,” says DeMoulin. “We welcome people for as long as we’re able to provide the support that they need. For many people, that means a lifetime. However, there have been people that have come here and have chosen to leave. That’s all part of the freedom we want people to have.”
Partially funded by Ontario’s Ministry of Community and Social Services, L’Arche Toronto is incorporated as a not-for-profit organization like other communities across the country. Additional monies are raised through its fundraising wing, the L’Arche Canada Foundation. The Toronto chapter also invites local churches to participate. On Monday evenings, core members and assistants come together at the Gathering Place, affectionately known as the GP. There, they worship and celebrate as a community. But though it recognizes the spiritual and religious needs and aspirations of its members, it also respects those with no affiliation, Demoulin says.
L’Arche in the Workplace
In Toronto, assistants and work support coordinators oversee core members in their work and volunteer placements: coffee shops, grocery stores, cosmetics boutiques, printing companies, daycare centres and food banks, as well as several non-for-profit agencies. According to L’Arche Canada, people with developmental disabilities may not be the most “economically productive” in their placements. They may be at the bottom of a competitive society’s caste system. However, they reportedly have a “humanizing effect” on their employers and co-workers. As a result, the ‘turnover’ of core members with jobs has been low in the last five years, the organization says.
Stephen Richardson, 48, is one of the founding core members of L’Arche Daybreak’s Craft Studio. These days, he works three days a week at Toronto’s Lemon & Allspice Cookery, a food catering service a part of Common Grounds Co-operative, which supports workers with intellectual difficulties. Even though he deals with a learning disability and other challenges, he identifies himself by who he is and what he does. Stephen is an artisan and pastry chef. He lives independently in a downtown apartment with assistance from L’Arche.
“Oh, I like cooking and I like baking cookies, brownies and date squares. I just made this thing called beef stroganoff,” Stephen says nonchalantly, sporting smeary ‘chef whites,’ an apron and trousers. “There are a lot of deliveries to be made here … There is no shortage of work.”
Taking pride in his work, he obsesses about late food orders and is picky about plates. “I usually cope with pressure very well. If we get busy, I know how to handle it. But if I start to feel too much pressure, I just sort of find something else to do.”
He continues, “I enjoy taking the bus to work. I like my boss; she is a nice person. Together, we make the big cookies and we sell a lot of them … I can do more here.”
Generational Woes
L’Arche is aging, though. Some say people with developmental disabilities are living longer because of their community-based care. Mainly, however, the advancement of antibiotic medication has prolonged the lives of disease-prone cerebral palsy and Down syndrome patients. Now living into their 40s and 50s, those with the congenital disorder are likely to experience early-onset Alzheimer’s disease. Despite cooperation between developmental service providers and care access centres, there are long waiting lists and a scarcity of support. Additional funding is needed for high-level, home-based medical procedures and even bathing, according to L’Arche Canada.
Guido says, “It’s a complicated reality for L’Arche now. Our whole culture has changed. We are becoming wiser in supporting people as they’re aging and dying … There’s a point when it is no longer viable for (L’Arche) to provide a certain level of care, when their needs are so high because of dementia, for example. It’s a choice we make like any other family.
“But L’Arche’s membership does not end when we stop giving services, when core members are moved to long-term care facilities … Instead of assistants setting goals with members, assistants are going to have to help core members let go of what they used to do.”
Perhaps it is a magnificent ideal, but not an impractical one, sources say of the revolutionary community. In the book, Enough Room For Joy: the Early Days of L’Arche, author and Jesuit priest Bill Clarke, SJ, writes that those who are “radically dependent on others” are never deprived of healthy relationships in L’Arche communities.
Guido admits his own life has been transformed by “true friendships” with people with a disability. He remains inspired by their natural simplicity, openness and affection.
“I’ve never seen people so well and strong and so resilient,” he says. “Many of them may have been imprisoned (in institutions) for years, because their families were unable to see them in another light. But they have been able to get through that to a place of maturity and capacity to be fruitful and life-giving to others. That should say a lot to people.”
Originally published in the Catholic New Times, May 2006
