The mother of a young boy with Down's syndrome, Maria Jose de Farias has revitalized a parents' association and is reaching out to help families affected by Down's syndrome in the favelas of Rio de Janeiro.
Maria Jose is a self-starter, accustomed to building projects from scratch. The eldest of five children, she began tutoring children with learning disabilities when she was just fourteen years old. After working for years in tourism and publicity, she built a small snack bar on a beach an hour's drive outside Rio de Janeiro. It expanded quickly to become one of the most popular hotel and restaurants in the area. She helped the beach community obtain its first public telephone and post office, both of which she administered. Now she wants to dedicate herself full time to the Sim-Down project. Maria Jose says, "For me, it's important to create something new, to build something that others thought would be impossible, to be a pioneer. For that, I have great faith in hard work."
When Maria Jose gave birth to her second child eight years ago, she was shocked when he was diagnosed as having Down's syndrome, a form of mental retardation caused by the presence of an extra chromosome in the genetic structure of human cells. Coming from a middle-class family, she was able to consult private doctors, who explained that children with Down's syndrome tend to be gentle and loving, and that with special stimulation and education they can learn to read and write and participate fully in family and community activities. Armed with that information, she was determined to make his life as normal as possible; today her son attends school, takes swimming lessons, practices tae kwon do, and has friends like any other child.Still, she noted that she rarely saw other Down's syndrome children on the street or in stores. It seemed as if their families were embarrassed or ashamed and kept them hidden. Interested in exchanging information and experiences with other parents, she decided to join an association for families with Down Children at a Rio de Janeiro public hospital specializing in genetic problems. She found that the association was actually doing very little. Furthermore, the organization had no plans to reach or serve the thousands of Down-affected children in the poor and slum neighborhoods of Rio de Janeiro. A natural organizer, Maria got herself elected president in February 1991. Within months, the association, called Sim-Down, which means "Yes-Down," had been transformed into a dynamic group offering counseling to parents and seminars on Down's syndrome to doctors and health workers, particularly those working in the favelas. "For many parents from Rio's poor urban slums, who never had been given a proper description of their children's conditions, the existence of the Sim-Down group made all the difference between despair and hope," says Maria Jose. Maria is now helping several emerging neighborhood support groups to develop joint strategies to obtain adequate health care, acceptance of Down children in schools, and more understanding from society in general. She is also planning to create an information kit that can be given to parents of Down children at hospital nurseries. An adaptation of a kit currently available in U.S. hospitals, it would include pamphlets explaining the syndrome, a book of questions and answers, names and telephone numbers of Sim-Down volunteers, a cassette tape with additional advice and suggestions, and a special pacifier that helps strengthen the tongue and mouth of Down babies. Finally, Sim-Down plans to create public-service messages to air on radio stations. "We want people to know more about Down's syndrome, because the more they know, the less prejudice there will be," Maria Jose says.
The United Nations estimates that as many as fifteen million Brazilians--ten percent of the population--suffer some form of physical or mental incapacity or retardation. There is no precise data on how many Brazilians have Down's syndrome. Without such data, Brazilian health and welfare officials do not have any idea of the true dimension of the handicapped community, and that makes it difficult for the affected families to press for government aid.In a country where a large part of the population lives in poverty, suffers from poverty-related health problems, and does not have access to quality medical care, it is not surprising that families that suddenly find themselves with a retarded child have nowhere to turn. Furthermore, in poorer communities educational levels are low and access to accurate medical information is rare; hence, families find themselves discriminated against even more. The ill-informed often confuse mental retardation with mental illness, or some kind of spiritual curse, and parents hide their Down's children to spare them or the family from ridicule. They miss opportunities to obtain vital physical therapy that could help their children live more normal lives. While numerous parents' associations exist around the country for the physically handicapped, fewer than a dozen small support groups exist for Down families. None cater to the poor.
When Maria Jose became involved in Sim-Down, she realized how privileged she was to have received accurate, sympathetic advice from her doctors when her son was born. The poor did not have the same luck. She determined to make Sim-Down an outreach program to provide information, counseling, and recreation for poor Down families. However, Maria Jose believed that only by involving both the rich and the poor, would she be able to accomplish her goals: "We all have the same problem--it crosses class barriers--but middle-class and upper-middle-class people have access to information, money, and power. I believe they'll be able to share these assets with the poor because they share the same problem."Sim-Down has organized meetings and seminars, inviting parents to talk to one another and to meet social workers, psychologists, and doctors. With the support of the Catholic Church, they have organized several outreach activities at local parishes, including recreation-information days in some of Rio's poorest neighborhoods. "Some of our people organize games and provide snacks for the children while mothers have a chance to talk to each other and to the doctors, dentists, and geneticists we bring along," she explains. Through her appearances on radio and TV programs, Maria Jose has received many requests to hold these recreational activities and educational meetings outside Rio. Maria sums up the importance of this with this comment: "I believe we're accomplishing our first objective: to get the word out about Down's syndrome, especially to the poor people. We're also developing organizations involving people from all classes of society. If we are strong in numbers and credibility, we can help ourselves and ask for an extra hand from the government."