Although leprosy is now a curable disease due to the development of multidrug therapy (MDT), people affected by leprosy are still facing the harsh reality of “not being accepted by society” in many parts of the world. Both in Japan and abroad, I have always called for the need for a two-sided approach in tackling leprosy if we are to achieve success; just as the two wheels of a vehicle need to function synchronously, we need to both address medical care and eliminate discrimination.
The human rights violation against people affected by leprosy is an old, deep-rooted issue that has existed since the beginning of human history. That is the reason that it calls for a global discussion rather than being handled as a local issue. But to be taken to the table for global discussion, the issue must be first understood by policymakers and intellectuals of the world. The most effective way, then, would be to increase knowledge and understanding through their influence. The first time that I spoke on the issue of human rights in relation to people affected by leprosy was at Forum 2000 held in Prague, the Czech Republic, in October 2001. Forum 2000 is an international conference that was founded to solve common challenges of humankind such as regional conflicts, population and environmental issues. It was there that I made a keynote speech entitled “Health and Human Rights” on the subject of people affected by leprosy and human rights.
The conference participants seemed to have been quite shocked by my report. “I never knew that such a serious issue existed so close to us. I will investigate as soon as I arrive home.” These were the words of the then foreign minister of East Timor and a Nobel Peace Prize laureate, Dr. José Ramos Holta. It seemed that I was able to convince Dr. Holta and many other dignitaries that leprosy was a global human rights issue.
Conferred a medal of recognition for work in leprosy by President Holta at the Tenth Anniversary of the Independence of East Timor
East Timor had in fact achieved elimination of leprosy on the national level by meeting the WHO criteria of having less than one patient per ten thousand population. I was invited to attend the celebration ceremony where I was able to share this joy with Dr. Holta who was the president of East Timor at the time.
Having had a positive response at Forum 2000, I decided that I would now take the issue to the United Nations Commission on Human Rights and push them into action. Up until that time, leprosy was dealt with as a medical issue by WHO. However, as mentioned earlier, there was much more than a medical side to leprosy. Many leprosy patients were neither able to come out to receive treatment for fear of even worse discrimination nor were they accepted by society even after being cured. This was clearly a social issue and outside the scope of the work of WHO. Therefore, I decided to take the issue to the United Nations as a human rights case. Yet, to my surprise, the UN Commission on Human Rights had never once included leprosy in their human rights agenda since its founding more than fifty years ago. Of course, it made me realize the extreme difficulty of directly appealing to a United Nations organ. It would be, as the saying goes, “much easier for a camel to go through the eye of a needle” than for a private citizen like myself to succeed. But I was prepared and determined to face this difficulty.
In July 2003, we started out by first visiting the Office of the United Nations High Commissioner for Human Rights in Geneva where we were given an opportunity to explain the issue to the staff of the High Commissioner’s office, but our audience consisted of only five people who had taken the trouble to come. It was a totally disheartening result, especially when I thought of the staff of The Nippon Foundation who had so enthusiastically prepared for this meeting, including making a video.
Nevertheless, we did not give in to disappointment and continued to prepare for a seminar that we had planned to hold for the members of the Sub-commission on the Promotion and Protection of Human Rights, one month later. On the day of the seminar, Ms. Natsuko Tominaga, a member of our staff and a photographer, displayed posters, photographs and brochures that she had brought from Japan at the entrance of the venue. It was a full day of hard work but carried out with the hope of attracting the interest of many people. We stood outside the room to attract the attention of as many people as possible so they would come and hear what we had to say. We also prepared a light lunch. But majority of the people showed no interest and would just pick up the lunch package and walk away.
During the next three to four years, the sub-commission seminars went through a disappointing period during which there were only about six to fifteen participants, but once again we did not succumb to this miserable situation and continued on. We must have looked like a strange group of people in the eyes of passersby as we milled around the lobby of the Palais des Nations (The United Nations Office at Geneva). As we had expected, we met with formidable obstacles in our attempt to appeal to the international community to understand the close relation between leprosy and basic human rights. Yet, for decades, I have continued, international activities based on my own motto: “overflowing passion, perseverance to overcome whatever difficulties and persistence until the results are achieved.” What we were confronted with was nothing to become disheartened about. I was determined to continue to appeal to the United Nations with strong conviction.