In the northeast of Brazil, Dulcinea Xavier is developing much-needed services for low-income families with children (or other family members) with disabilities. A social worker by profession and the mother of a child with Down's Syndrome, she is also mobilizing new efforts to improve public understanding of people with disabilities and to encourage their full integration in society at large.
The New Idea
Dulcinea Xavier is persuaded that low-income families with children (or other loved ones) with disabilities are in desperate need of assistance in addressing that challenging and stressful dimension of their lives. She is also convinced of a similarly pressing need to change the perceptions and attitudes of the public at large toward people with disabilities, and of the benefits, to all parties involved, of integrating such people into the mainstream of community and national life.
She is thus developing an array of services and support networks to assist the affected families and devising new ways to combat conventional views and attitudes toward disabled people and the place that they should occupy in the community at large. In those endeavors, she is emphasizing both the special needs of women in the affected families and the contributions that women can make as advocates of needed changes.
The services that she is working to make available include a public health reference system, which will provide better diagnostic information and guidance for people with disabilities and their families, and a network of professionals and volunteers to provide solidarity and counseling at the moment of diagnosis and the traumatic early stages of coming to terms with new and difficult responsibilities.
Dulcinea's efforts to change public attitudes toward people with disabilities and their integration into society at large include the organization of citizens groups to develop new programs toward that end at the community level and the mobilization of similar initiatives by women's groups associated with rehabilitation centers. As a leading member of an association of relatives and friends of people with Down's Syndrome, she is also negotiating with school systems to make sure that legally mandated places in public schools are in fact made available to children with disabilities.
In describing the wrenching realities that she is helping low-income Brazilian families address, Dulcinea offers several observations. "When a child is born with a disability, or if a disabling accident occurs," she notes, "a painful process begins, caused not only by practical questions like overcoming barriers and limits, but also by our ideological reconstruction of such events. When we are not directly involved, we tend to take little interest in people with disabilities or their families. We view disability as a disease that we don't need to think about, since we believe that we will never need to face it. We thus fail to recognize the emotional and social implications for other affected people."
In describing the initial stage of the "painful process" that the families of people with disabilities must somehow endure, she notes that "the family first confronts this situation at the moment of the diagnosis provided by a health professional who is generally poorly prepared to relate to the family's needs and expectations." She also points out that "the information provided is often limited to a discouraging prognosis, overlooking the feelings it provokes–of guilt, fear, impotence, and shame." And for low-income Brazilian families, as Dulcinea is quick to emphasize, a deeply disturbing situation is made even more distressing by the fact that public maternity wards and hospitals in Brazil do not allow families to be with their loved ones who are in their care, and mothers must experience the trauma of giving birth to a disabled child in total isolation.
Families, and mothers in particular, try to overcome their negative feelings by turning to institutional rehabilitation for their disabled offspring or by adopting an overly protective attitude toward those who remain in their homes. But, while institutional rehabilitation sometimes relieves feelings of impotence, it also means that many people with disabilities spend their formative years, and sometimes decades, in settings where they are deprived of many of life's most rewarding experiences. In such instances, moreover, the affected families fail to perform a much-needed societal role in changing public understanding of and attitudes toward people with disabilities and advocating the full acceptance and integration of such people in society at large. Unfortunately, they instead elect to become part of the "silence" that Dulcinea disparagingly depicts as "an accomplice in the apartheid practiced against people with disabilities."
In her efforts to provide much-needed services and support networks to assist the affected families of people with disabilities and to alter conventional views and attitudes toward people with disabilities and the place that they should occupy in society, Dulcinea is pursuing a multipronged strategy. She is implementing that policy through several organizations in Recife, in northeastern Brazil, which she views, in part, as models for replication in other communities. The organizations that she is both strengthening and drawing on, in order to realize her objectives, include The Association of Relatives and Friends of People with Downs Syndrome, a newly created Solidarity Network to Empower People with Disabilities and Their Families and the also newly organized New Way Collective. Dulcinea's current efforts to support and assist families with children (and/or adult members) with disabilities include the negotiation of agreements between public maternity wards and hospitals in Recife and the Solidarity Network that will enable new mothers of infants diagnosed to have disabilities (and others hospitalized for diagnosis and/or treatment of disabilities) to be visited by family members and others who can offer support and counsel at a particularly stressful time. She is also refining plans for a public health reference system that will provide hitherto seldom available diagnostic information and guidance for people with disabilities and their families. And she is mobilizing women's groups and other volunteers to provide sensitive and timely support and counseling services.
In her campaign to alter public perceptions of people with disabilities and spur their integration into community life, Dulcinea has organized women's groups in poor neighborhoods of Recife that are currently exploring gender-related dimensions of that challenge. Through the Solidarity Network, she is training women (and men) to play key roles in local health committees and use those fora for building improved understanding of the needs of people with disabilities and the contributions they can make to their communities. And through the New Way Collective, she is developing an array of activities specifically aimed at enabling people with disabilities to become fully integrated members of their communities.
Through the Association for Parents of Children with Down's Syndrome, Dulcinea is also struggling to open up spaces for all children with disabilities in Brazil's school system. But such changes have been slow in coming, and the group is now pushing for the implementation of an "affirmative action" approach that would mandate the assignment of ten percent of school places to children with disabilities, in accordance with a law that has been enacted but not yet been enforced.
Dulcinea first became interested in the world of people with disabilities at the age of seventeen, when she participated in a program at a rehabilitation center for the visually impaired in Belem and learned the Braille alphabet. As a young social worker, she also took part in some of the cultural activities and meetings of an association of the blind in Recife.
When she was 32, her son Felipe was born with Down's Syndrome. Like other people and families involved with this issue, Dulcinea was troubled both by the very limited availablity of useful information from health care professionals and her own lack of preparation to live and cope with Felipe's special needs. She sought to overcome these gaps by taking part in various activities organized as part of the International Year for People with Disabilities. Another source of inspiration and learning were mothers who had the courage to help her avoid their mistakes. One of them taught her (by correspondence) how to use a helpful regimen (the Bobat method) for working with Felipe at home.
The positive results gained from using that technique became evident in Felipe's development. As Dulcinea describes it, "Felipe was not constrained in what I consider segregating environments for motor rehabilitation. His older brother and I helped him learn how to walk, run, swim and ride a bicycle–a skill that no clinic has been able to impart to children with Down's Syndrome. Felipe is now a fully integrated teenager. He develops his own social ties and is invited to parties and outings without my having to intervene. He studies music at a school with other children his age and goes to a regular primary school."
From the beginning of Felipe's socialization process, Dulcinea sought to integrate him into the regular school system. Not surprisingly, however, she ran up against a number of barriers, and Felipe had to change schools several times. The main problem, as Dulcinea perceived it, was "the lack of a teaching/learning process to take full advantage of the potential to be found in individual differences." Making sure that society takes full advantage of the potential of people with disabilities has subsequently emerged as one of the principal hallmarks of her work.