Approaching the United Nations (3) -People affected by leprosy take the floor
In my work in approaching the UN, there was one thought that was bothering me. Since the issue of “Leprosy and Human Rights” was new on the agenda I had an uneasy feeling that it might be “swallowed up” into a bigger category, specifically “Health and Human Rights”, to be treated as one of the topics within this category.
In 2003, I went to consult the United Nations Office of High Commissioner of Human Rights, for the first time. I was introduced to Prof. Paul Hunt of Essex University who was then the special rapporteur for “Health and Human Rights” at the UNHRC.
At that time, the UNHRC had strong interests in universal issues such as “Women and Human Rights”, “Children and Human Rights”, or “Poverty and Human Rights”. Prof. Hunt had in mind that the issue of leprosy should be incorporated with other diseases, and to be treated under the agenda to “abolish discrimination based on disease” and that I should push this idea forward.
However, I, as one who knows the long ‘negative’ history of leprosy, could not regard leprosy in the same light as with other diseases. I was determined that it be treated as an independent issue.
In 2005 I was once again had an opportunity to give an oral statement at the Sub-commission (Advisory Committee). The room was crowded with representatives of other NGOs who were equally given three minutes to submit their issues. I began to feel intensely that I had to attract the attention of the members of the Sub-commission whatever it took, to stand out among the massive amount of other presentations.
As my turn was approaching I thought of something at the spur of the moment. That was to have the four people affected by leprosy who were accompanying me from India, Ghana, and Nepal to take the floor.
Except for Dr. Gopal who had many experiences of speaking at international conferences, the others never thought that they would ever have such an opportunity in their lives. I told them suddenly, “you are the main players today so I would like each one of you to speak for 30 seconds.” With these words they started to shake with surprise and fear.
Time had finally come. I took the microphone at the speaker’s seat and said: “The people affected by leprosy will now take the floor. “ With this the entire room was filled with a murmur of surprise and commotion. The members all turned their eyes towards us. Some stood up to look at the affected people. I still cannot forget this somewhat strange atmosphere. This is indeed the unleashed reality of human rights and leprosy.
However, those once affected by leprosy had a commanding presence. Although feeling very nervous, each spoke of their experience with dignified attitude. Ms. Nevis Mali, a lady from India had tears in her eyes as she spoke reminiscing her past. For them it was a short moment of ordeal but their expressions were glowing with satisfaction as they left the speaker’s seat. Even to this day, I feel that a huge stride had been made and that this day would always remain in the history of leprosy.
Maybe because of this experience, I was finally starting to feel at the dinner to which I had invited the experts of the Sub-commission, while it was in session, that they were starting to understand the importance of deliberating leprosy as an issue on its own under the theme “Leprosy and Human Rights”, that I had adamantly continued to insist upon. However, as I was feeling sure that the next step would be the deliberation of a resolution at the General Assembly of the UNHRC, a major happening befell upon us.
I will continue to tell you about it in my next column.