Maria José De Farias

Ashoka Fellow
Brazil,
Fellow Since 1991
Sim-down

Citation

This profile was prepared when Maria José de Farias was elected to the Ashoka Fellowship in 1991.
The New Idea
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 Problem
The Strategy
The Person

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