Commencement Doctor Honoris Causa at Sofia University
It is a great honor for me to be conferred the degree of Doctor Honoris Causa from the oldest and biggest university in Bulgaria, ‘St. Kliment Ohridski’. And it is a privilege to have the opportunity to talk to you today about my life-long efforts to eliminate leprosy.
I wanted to show you this short film so that you could see the reality of those who have suffered and still suffer from leprosy today. As you saw in the film, leprosy was once considered an incurable disease, a curse or punishment from God, and it was feared and detested by people for centuries.
However, thanks to the development of effective treatment, leprosy became curable. And I knew it would not be an easy task, but I was determined to make the treatment available to all those who were suffering from the disease. So with the cooperation of WHO, The Nippon Foundation began making the treatment available free of charge around the world.
Since we were distributing effective medicine, we expected we could see some immediate results. Nevertheless, we faced many unexpected challenges.
For example, I saw that many patients did not know how to take the medicine. Some had only known traditional medicine, so I had to show them how to remove the tablets from the blister pack and to take them with water.
In one tribe in Africa, where it was the custom to share food equally, they also shared the distributed medicine among the villagers. Of course, this meant that the treatment was not effective.
In some cases, patients did not come forward to receive treatment even though it was free. This was because they had no symptoms or pain in the early stages, or because they were afraid of being discriminated due to leprosy.
It was clear that simply distributing the medicine free of charge was not sufficient. We needed to take it into consideration local customs, practices and culture.
With this in mind, we worked in cooperation with WHO, health ministries, medical professionals, and NGOs in order to provide treatment more effectively.
As a result of these joint efforts, many more patients were treated and cured, and the number of patients greatly declined in many endemic countries. I began to feel a sense of achievement in the distribution of the medicine that had produced such results.
Although the number of patients decreased, what I witnessed was that the lives of those cured of the disease had not changed much. Even after being cured, they continued to live in the sanatorium or leprosy colony where they had lived as patients. Some of the places looked like a pile of rocks standing in a barren low land, others were built on the narrow strip along the railway tracks. There were no physical walls that separated them from the outside world, but an invisible mental wall that the residents never crossed over. They no longer had leprosy, but they lived as former “leprosy patients.”
Seeing this, I realized that I had been too optimistic about the stigma and discrimination associated with leprosy. I had simply thought that curing the disease would also help to end the discrimination. In reality, however, even after being cured, the label “former leprosy patient” persisted for the rest of their lives. This seems to be a problem, which is particularly associated with leprosy.
I learned that the issue of leprosy requires more than just medical treatment. It is a problem of our awareness and I began addressing this problem, too.
When talking about the fight against leprosy, I often explain it in terms of a motorcycle. The front wheel represents the medical approach to cure the disease, and the back wheel represents the social approach to eliminate the stigma and discrimination. Just as the motorcycle will not go forward unless the two wheels are moving together, I believe that we need to adopt both approaches, medical and social, together and at the same time.
As for the back wheel of the motorcycle that addresses the problem of discrimination, I wasn’t sure exactly where to start. I worked on the medical approach with WHO, health ministries and medical experts, but I felt the need to involve different stakeholders to help with the social approach.
I realized this discrimination and stigma were a violation of human rights. That is why I decided to take it up with the United Nations.
It was in 2003 that I visited the UN Office of High Commissioner for Human Rights in Geneva for the first time. There I was told that leprosy-related discrimination had not been recognized as a human rights issue, because no one had ever brought it up before.
This was not difficult to imagine…Those cured of leprosy hesitated to speak out and assert their human rights. They were afraid of discrimination. Perhaps many were not even aware that they are entitled to human rights. One person who had been cured of leprosy asked me,
“Do we really have human rights?”
I could no longer close my eyes to their suffering, and felt the need to bring up the issue of discrimination associated with leprosy.
After that, I repeatedly visited Geneva, held meetings, and organized poster sessions. Although I tried to draw attention to this issue, it wasn’t easy.
But, I clearly remember one moment at a UN Human Rights Council subcommittee meeting, which I attended with a group of five people who had been cured of leprosy. I was given the floor to address the meeting. After saying a few words, I handed the microphone to one of them, a lady from India.
She stood up and said, “I once had leprosy.”
Up to that point, the audience had only been half listening.
But they immediately turned around and looked at her.
That was the moment I cannot forget, even now.
And for me, that was the moment when the issue of leprosy-related discrimination was recognized by the United Nations as a human rights issue for the first time.
Finally in 2010, seven years after my first visit, the UN General Assembly in New York unanimously adopted a resolution on elimination of discrimination against persons affected by leprosy and their family members. The member states are now working to carry out the resolution.
In taking the social approach, I think the involvement of those who have experienced leprosy is vital in eliminating the discrimination and stigma. I believe that it is important to let them speak out and let their voices be heard.
Through my experiences, I realized I could speak on behalf of those affected by leprosy, but nothing would ever have the persuasive power of their own voice.
After Sofia, I will go to the Vatican to take part in a symposium with the Holy See, where representatives of different religions, NGOs and government officials will discuss holistic care for people with leprosy that is respectful of their dignity. At such events, people cured of leprosy are invited to attend and talk directly to the audience about their experience.
When some people hear about my work, they tell me that leprosy is a problem of the past. They say there is no need for a struggle now. However, I believe that thinking about leprosy is precisely what we need to do now. Thinking about leprosy leads us to think about humanity. All over the world, the history of leprosy is often spoken of as a “negative history” which in some places was even forgotten or erased.
Yet, at the same time, the history of leprosy is also one in which people affected by the disease have shone brightly in facing up to and overcoming discrimination, even in the most desperate of circumstances. They lost their identity, their home, their family, friends and social ties—and yet, the path they have taken as human beings teaches us the strength and tolerance that human beings are capable of. It is an invaluable history.
For this reason, I believe we must pass on to future generations the experience and record of the discrimination suffered by people affected by leprosy, so that humankind will never forget. We must ensure that their voices will be heard by future generations. I consider this to be an important mission and I will continue to work to preserve the history of leprosy.
Thank you once again for giving me the honor of receiving this Doctor Honoris Causa today. Not only am I honored by this prestigious degree, but I am very encouraged by your support and fortified by your understanding.