Lalita Devi, a resident of Sai Baba Kushth Ashram in Allahabad, UP, India, photographed in December 2017 for the exhibition “Our Lives”.
In recent years, leprosy control activities have been stagnating and I have been thinking about what can be done to overcome this situation.
On a recent visit to Indonesia, I went to a small radio station in Makassar to take part in a live program about leprosy with someone from the local health department. As usual, I tried to talk about leprosy in as plain language as possible. During the program, calls came in from listeners.
“If I get leprosy when I’m pregnant, will my child also be infected?” “Is every white patch a sign of leprosy?”
I was struck by the refreshing directness of the questions, and at the same time I appreciated the importance of addressing the specifics that people want to know about.
As a matter of course, the messages I put across at every opportunity are that leprosy is curable, treatment is free and that discrimination has no place. Wherever possible, I also invite local media to accompany me on my field trips and report on the situation in their country. On such occasions, I believe there is no better form of awareness-raising than for them to see me physically interacting with persons affected by leprosy.
My experience at the radio station in Makassar, where I was able to reply on the spot to questions the public had about leprosy, suggested to me that this is a more effective approach than having experts just transmit correct knowledge. I have come to think that this style of communication will help resolve misunderstandings among people who have little contact with leprosy in their daily lives, thus creating a positive conversation about the disease. I am now actively exploring opportunities to appear on TV and radio as part of my mission.
Making leprosy part of everyday conversation via radio and television will help to dispel misperceptions about the disease, encourage people to seek treatment, and make the work of national leprosy control programs easier.
It is true that many people don’t know very much about leprosy. But if we want to increase our chances of overcoming the disease—and the stigma—we need to get people talking about it more.
- Yohei Sasakawa, WHO Goodwill Ambassador