It was March 2004 when I was finally given an opportunity to speak at the plenary session of the United Nations Commission on Human Rights. Although I was given only three minutes, I was able to address the representatives of the 53 member countries. As the first official speech ever given at the United Nations on “Leprosy and Discrimination,” it was the very historic occasion. I would like to quote the entire speech here below:
Mr. Chairperson and Distinguished Delegates,
I am here to talk to you about leprosy and human rights. If left untreated, leprosy results in serious deformity. Consequently, throughout the ages, it has triggered fear and loathing. Patients have been isolated. Isolation led to discrimination. Discrimination turned people into pariahs.
Once affected, a person was fated to a life more miserable than death.
Families were terrified of the shame if a member developed leprosy. They kept the leprosy-affected hidden from view. Or they simply abandoned them.
Today, leprosy is treatable. Since the early 1980s, 12 million people have been cured. One hundred and sixteen countries have seen the disease eliminated as a medical issue. Today, there are fewer than 600,000 known cases.
But a problem remains. Discrimination is still rampant. Those cured of leprosy still cannot marry. They cannot get work. They cannot go to school. They are still treated as outcasts. The problem is massive, global in scale.
Many still think leprosy is dangerous or hereditary. Many still see it as a divine punishment. And so, millions live in isolation. They have no homes to return to. They are dead to their families.
As WHO Goodwill Ambassador for Leprosy Elimination, I spent 125 days last year travelling to 27 countries. I have seen this damage with my own eyes.
So, why has this never been treated as a human rights issue? This is because these are abandoned people. They have had both their names and their identity stripped away. They cannot cry out for their rights. They are silenced people.
That is why I stand before you today—to draw your attention to these voiceless people.
Mr. Chairperson and Distinguished Delegates, leprosy is a human rights issue. I urge the members of this commission to rectify this problem, to develop a resolution, to support worldwide research. And to create guidelines that guarantee freedom from discrimination for all affected by leprosy.
In parallel with the UNCHR plenary session, a special session was held where people affected by leprosy from a number of countries reported on the history and the current situation of leprosy. The number of participants was still about ten people, not a big number. But it was gratifying to see that they were listening intently to the following words of Dr. P.K Gopal from India and one of the members of the delegation of people affected by leprosy.
“To this very day, we the people affected by leprosy never thought that discrimination based on prejudice was a violation of our human rights. We accepted it as our destiny. But I believe that from now on there will be a growing awareness that eliminating discrimination is the responsibility of society.
The following year in 2005, Dr. Gopal became the first president of the National Forum, an organization of people affected by leprosy throughout India, established with funding provided by The Nippon Foundation.
A few months after the plenary session and the special session, I had an opportunity to invite the twenty-five experts of the UN Sub-Commission on the Promotion and Protection of Human Rights to dinner to discuss leprosy and explain related issues. After I had finished, it was the chairperson of the Sub-Commission and a distinguished international jurist and former attorney general of India, Dr. Soli Sarabjee who stood up. He was very concerned about the seriousness of the issue of leprosy in his own country, India, and made a proposal saying, “Let us, as members of the Sub-Commission, actively be involved in tackling this issue.”
The weight of this statement was magnanimous. At last, the United Nations had taken a step forward.