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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INTERVIEW: Three Decades of Struggle

Artur Custodio M. de Sousa reflects on MORHAN's efforts to promote the reintegration of persons affected by Hansen's disease into Brazilian society.

When was MORHAN established?

MORHAN was established at the beginning of the 1980s. This was a time when several social groups in Brazil gathered to fight for citizenship rights and economic, social and democratic advancement. This was also a time when public policies on Hansen's disease in Brazil were changing from compulsory segregation toward outpatient treatment with multidrug therapy. There was a need to lessen social prejudice against people affected by Hansen's disease, as well as to make progress toward eradicating the disease itself.

Does MORHAN's mission remain the same, or has it changed?

Our mission remains unchanged, but our strategies and networks have evolved. We've also developed a broader, intersectoral approach. We've added new fields of action, including education, culture, and the environment, and developed different strategies for different groups, such as children or the elderly.

Why does Brazil still have so many cases of Hansen's disease?

Hansen's disease has always been associated with excluded social groups who lack the power to speak out and influence public policies. Furthermore, Hansen's disease requires continuous action, and it takes a long time for the effects of that action to be seen. Most officials at the federal, regional and municipal levels neglected long-term actions that should have been implemented in the 1980s and 1990s.

What are the main issues facing people affected by Hansen's disease in Brazil?

There are two key issues. The first concerns the former colonies. Residents need access to high-quality medical care for non-Hansen's disease-related health problems. Plus, there are issues involving citizenship, quality of life, and use of existing infrastructures to be addressed. The second key issue concerns the persistence of Hansen's disease in Brazil. Among other things, we need a sustainable policy of continuous action; easy access to medication and treatment; a strengthening and broadening of information, education and communication activities; and the involvement of all of society in the struggle against the disease.

What have been some of MORHAN's most successful achievements?

MORHAN's accomplishments are achieved daily through our continuous social struggle. In the 1990s, our efforts led to the abolition of discriminatory laws and the official prohibition of the use of the term "leprosy." More recently, we have invested heavily in media campaigns to inform the public about the disease, as well as strengthened our participation in several official bodies with deliberative powers, such as national, regional, state and municipal health councils. In 2007, we succeeded in sensitizing President Lula da Silva to sign a provisional measure, which subsequently became law, to compensate persons who were forcibly segregated. To date, more than 5,500 applications for compensation have been approved.

How closely does MORHAN work with the government?

Alice de Tibiriçá, a social activist in the 1930s, said, "With the government, if required; without the government, if possible; and against the government, if necessary." Most of the time, MORHAN works closely with the government, but there are also times when we represent society's dissatisfaction.

The WHO is exploring ways of strengthening the participation of people affected by Hansen's disease in leprosy services. What are your views?

Without a doubt, people affected by Hansen's disease have much to contribute to public policies. In Brazil, MORHAN finds inspiration in the teachings of Paulo Freire, who says, "There isn't greater or lesser knowledge, only different kinds of knowledge." Based on this, we believe that the knowledge of those who have experienced the disease and who belong to the community must be respected and heard. But this role must be an active one, not a mere concession. It must have an impact; that's an essential feature of any participatory process. People affected by leprosy must be included in both the design and execution of public policies. Otherwise, it's just an empty gesture.

What has MORHAN taught you?

I've been with MORHAN since I was 16. I've learned that people are not and should not be treated as commodities, and that respect for all forms of life is fundamental. I've learned that we should be less competitive and "Darwinist" in the organization of our societies, and that we should cooperate more. Today, I am passing on to my children much of what I've learned. It fills me with pride to see them engage in social struggles and activism, and I give thanks to the likes of Bacurau and many others from MORHAN who have shaped my outlook.

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Profile: Artur Custodio M. de Sousa

Artur Custodio M. de Sousa is national coordinator for MORHAN, the Movement for the Reintegration of Persons Affected by Hansen's Disease.