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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

COLUMN: Thoughts on Empowerment

People affected by leprosy must be treated with the respect they are due.

All smiles: participants in the IDEA Nepal empowerment workshop in Jhapa District last December

On 3 December 2008, I hosted a Women's Empowerment Workshop for people affected by leprosy organized by IDEA Nepal in Jhapa District. Around a dozen women affected by leprosy from three different districts attended the program.

As the workshop progressed, the women grew more confident, asking questions and eager to learn about their rights. I found it very inspiring to see them becoming empowered to live as normal members of society.

Yet many other women did not have the opportunity to attend. For this kind of program to be truly effective and reach every person affected by leprosy in Jhapa, it must be implemented in all Village Development Committees.

A recent study has shown that in Jhapa alone, 210 people have leprosy. The real number is likely to be much higher, however, as many people hide their illness through fear of discrimination.

Let me share a personal experience. After my brother got married, he began to notice that his wife was always hiding her right hand. This continued for a few months, and eventually he discovered she had leprosy. For a while, he kept the disease a secret, afraid the family would disown them if they found out. But my brother and I are very close, and eventually he came to me for help. The night he told me, the three of us sat together and cried.

We took my sister-in-law to the Biratnagar Leprosy Center, where the doctors explained about the disease and started my sister-in-law on a course of treatment. After a few months, her skin darkened . a temporary side effect of the drugs she was taking. My mother noticed and asked what was wrong. Only then did we tell her.

My mother is not educated, and adheres to old beliefs about leprosy. For example, she banned my sister-in-law from cooking food in the house, even though we explained there was no fear of infection. She hasn't changed her mind, even though my sister-in-law is now cured. To me, this kind of discrimination inflicted by a family member is a form of psychological violence.

Such ill-founded ideas about leprosy are common. Many people tell my brother that he is unlucky to be married to a woman who had leprosy. People look at him as though he must have committed many sins in a past life to deserve such a 'bad' wife. Actually, our whole family faces discrimination as a result.

Five or six years ago, a friend of mine came to me in tears, telling me her husband had leprosy. Terrified of society's reaction, she has kept this a secret, but at great personal cost. I have not seen my friend or her husband since. They hide in their house, afraid to attend even social events such as weddings and funerals.

I believe the government must pass legislation outlawing violence in all its forms . physical, psychological, sexual . and help ensure that people affected by leprosy are treated with respect within the community. At the same time, people affected by leprosy need to be aware of their rights. They also need the means to live, and for this they need skills in order to lead independent, productive lives.

NGOs have different agendas, but the most important must surely be to advocate against discrimination. We all have equal rights, and that includes women and men affected by leprosy.


AUTHOR: Kopila Basnet

Kopila Basnet is a lawyer living in Jhapa District, Nepal.


Women suffer more discrimination than men. They are vulnerable to psychological violence because of their position in our society. I know of a woman, Bimala, who has been rejected by her husband and his family because she was diagnosed with leprosy. Culture, tradition and lack of education make it hard for her to fight for her rights.

- Kopila Basnet