Luiz de Barros (Brazil 1997) is implementing Brazil's first nationwide network of self-help groups for the mentally disabled, while challenging Brazilian society to recognize, understand, and address the needs and rights of the mentally disabled population in their midst.
La nuova idea
Luiz de Barros is developing a network of autonomous, decentralized self-help groups for psychiatric patients and their families throughout Brazil. These groups will provide basic support, peer counseling, and a safety net for the mentally ill. The groups will also reestablish bonds between psychiatric patients and their families and friends, and provide counseling and support for families trying to reintegrate their mentally disabled members back into their homes and lives.The self-help groups will be linked to a São Paulo-based service center that will address administrative and technical needs as well as take on the public role of defending mentally disabled people's human rights. The center will also serve as a clearinghouse of resources and up-to-date information regarding mental health treatment.
While Luiz encourages group members to continue their psychiatric treatment, he challenges health professionals to change their tendency towards considering their patients as passive recipients of care. Instead, Luiz promotes a dynamic where mental health professionals provide information to their patients and encourage them to actively participate in all decisions regarding their own care.
Luiz's approach impacts not only mentally disabled individuals and the way they conduct their lives, but also the way the medical establishment understands their role, and the way Brazilian society comes to grips with the mentally disabled population, which has been largely invisible up until now.
The pharmaceutical industry's recent development of self-administered medication for mentally ill patients has allowed for the deinstitutionalization of many of Brazil's mentally ill. However, these pharmaceutical innovations have not been coupled with an effort to orient psychiatric patients toward self-managed care. Many of Brazil's three million mentally disabled citizens experience a sense of denial of the existence or permanence of their illness. Thus, the majority of Brazil's de-institutionalized patients are unprepared to cope independently with their illness, and they lack the important support structures-such as family, friends, and peers-to help them through their social re-integration process.An ideologically and politically based mental health movement has exacerbated these problems. In the 1960s and 1970s, Brazil's mental health movement was defined by an anti-psychiatric philosophy. Primarily politically motivated, the movement pushed for human and civil rights while insisting that mental illness was a socially constructed condition, rather than a physiological reality. It advocated for Brazil's mentally disabled population to reject all forms of psychiatric care and thus made it more difficult for the mentally ill to accept their disability and seek appropriate long-term solutions.
By the 1980s, a second generation of the mental health movement emerged, distinguishing itself by a full-fledged acceptance of professional care and psychiatric treatments. While this helped to swing the pendulum over to a more balanced view regarding mental health treatment, it failed to challenge the existing problematic relationship between patients and their physicians, and it did not address the need to establish self-help groups for de-institutionalized care.
Luiz also notes that mental health treatment is typically excluded from Brazil's private health insurance plans, and that there is a lack of adequate extra-hospital services and facilities, such as day hospitals and night treatment centers. Such facilities could serve as alternatives to institutionalization during inevitable emergencies. Moreover, the legislation that regulates mental health care in Brazil was written in 1934, and sorely needs updating. Finally, Brazilian culture has tended to severely stigmatize mental illness, resulting in the invisibility of the mentally disabled and of mental health issues from the popular agenda.
Luiz's strategy includes several simultaneous steps. First, he is pushing for the formation of a critical mass of self-help and family groups as a complement to psychiatric treatments. Luiz will set up several groups in eight Brazilian states to act as regional anchors for national expansion.To establish a self-help group, Luiz combines four elements: the mentally disabled person, a family member, a health professional, and an institution (such as a church, hospital, university, business, or other association). Once he has joined at least these four, he provides a framework for conducting the self-help group, usually facilitating the first several sessions and catalyzing the process of acceptance of the mental illness and development of long-term maintenance strategies.
Next, Luiz is establishing an umbrella center for the decentralized self-help groups. The center will serve as the public arm of the mental health movement, identifying issues that require lobbying and legislative work and defending the human rights of Brazil's mentally disabled population. It will also act as a switchboard for groups to communicate with each other about their experiences, challenges, and successful strategies for coping with mental illness.
Luiz is also assembling materials that will allow others to follow self-help group formation guidelines when his direct involvement is not possible. He is developing a series of trainings for health professionals to start their own groups. Health professionals usually initiate the group and facilitate it until someone from within the group is ready to take over the leadership role. The training component is especially important for the wide replication of his project. Each health professional who participates in trainings commits to starting at least five self-help groups.
Finally, Luiz has developed a communications strategy to help spread his idea. He is producing a quarterly newsletter to reach out to psychiatrists and mental health professionals. He is also launching a website to serve as a resource node for the establishment of new groups and the networking of existing ones. He is launching a media campaign through major mainstream publications to disseminate information about how to participate in and/or form a self-help group.
Luiz has established a series of partnerships to ensure not only institutional backing for the project, but also to obtain support for the work on a national scale. Pharmaceutical companies are an obvious source of funding and sponsorship, and Luiz has already obtained strong backing from several senior pharmaceutical executives.
Luiz has lived with a mental disability for twenty years. He has undergone various types of psychiatric treatments and procedures and has been institutionalized several times. Luiz was forced to retire from his job because of his alleged mental incapacity. After hearing about the efforts of psychiatric self-help groups in the United States, Luiz started on the long and arduous road to accepting and living with his mental illness. Luiz returned to school and received a degree in business administration from the prestigious Getulio Vargas Institute, as well as a master's degree in education from the University of São Paulo. He now leads an active professional and family life, working full-time and supporting and educating his children.
At great personal risk, Luiz published two books that recount his own struggle with a mental disability. Both books have received wide popular and critical acclaim, and they have helped remove the veil of invisibility previously shrouding mental illness in Brazil.
Luiz is one of the first individuals in Brazil to make mental disability visible through his own experience. It is of particular relevance that Luiz is working on issues of disability as an "insider," taking a step forward in the movement's effort to foster leadership within its own population.