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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

INTERVIEW: Fighting for Human Rights

Tamara Biolo Soares brings passion to her work of combating discrimination.

Tamara Biolo Soares: her state is setting an example

Tamara Biolo Soares attended the recent New Delhi symposium on Leprosy and Human Rights, where she took part in the first meeting of the International Working Group to formulate plans of action and a monitoring system for implementing Principles and Guidelines for ending discrimination against persons affected by leprosy and their families. She shared her thoughts on the sidelines of the meeting.

How are you enjoying the symposium?

It's a unique moment to share both knowledge and experience, a moment we usually lack given our crazy schedules. The opportunity to be part of the International Working Group, drawing up a plan of action and being part of a process of building up a monitoring system, is also a wonderful one.

What issues does your state face with regard to leprosy, or Hansen's disease?

My state is the only state in Brazil with a low incidence of Hansen's disease, but we still have the issues you find all over the country. The other day, at a public hearing we held, there was testimony from a young lady whose mother had the disease. The daughter had been working at a firm for two years when she told a colleague. Within a few months she was fired. This is what the second generation has to deal with. If they mention they lived in a colony or are sons and daughters of persons affected by leprosy, they will face discrimination. They will lose their jobs and their communities. We are still concerned with late diagnosis, but social stigma is probably the biggest challenge that we have right now.

Have you heard anything at the symposium that has caught your imagination?

There was a statement from a Japanese expert about the impact that a museum has had in raising awareness about the disease. As a government, we are thinking about strategies to raise awareness. For example, we have engaged the first lady of my state in the fight against discrimination; she visited a colony, which was wonderful. We are thinking about how to share with society the knowledge that the disease is curable and there are no possible grounds to discriminate. Maybe there is role for a museum or similar.

How important is the role of the public sector in combating discrimination?

I believe the public sector has a huge role, but not only the public sector; it is a shared responsibility. I also believe we need affirmative actions to achieve de facto equality. It's not enough to abolish laws.

How much of your department's work concerns Hansen's disease?

I'm head of the department of human rights and citizenship. We are proud of the fact that in every policy we have, we take into account the views of the people concerned - women, children, the elderly, Afro-Brazilians, or in this case persons affected by Hansen's disease. Currently we don't have a specific department for leprosy, but the issue has been gaining attention. Historically in our state, the health secretariat would oversee Hansen's disease; now there has been a little bit of a shift to dealing with leprosy as a human rights issue, which is an achievement.

Is your state ahead of other states?

Very much. We are setting the example. Now one of my goals is to present to our representatives a proposal that the Principles and Guidelines become state law. That would be something that would pave the way for other states to do so as well. We have already started a conversation with a few representatives. They were really interested and we had a public hearing. We might be able to approve it as a state law.

One of my goals is to see the Principles and Guidelines become state law.

How did you get interested in this issue?

I'm a lawyer. I've always worked in human rights; specifically, the issue of discrimination. For my Master's thesis I studied the discrimination suffered by second-generation Haitian immigrants in the Dominican Republic. Given my interest in the second generation and indirect discrimination, the path to Hansen's disease was not so long.

Was there a particular case that got you started?

Yes, the case of the young woman that I mentioned. I first heard her testimony a year and a half ago, and it had a huge impact on me. This lady cries every time she talks about it. It is not an isolated case.

PROFILE: Tamara Biolo Soares

Tamara Biolo Soares is head of the Department of Human Rights and Citizenship of the Department of Justice and Human Rights of Rio Grande do Sul State, Brazil.