10th Anniversary of Ryoichi Sasakawa Young Leaders Fellowship Program at Jadavpur University
It is a great honor to be here today to celebrate this 10th anniversary of the Sylff Fellowship Fund at Jadavpur University.
The Sylff program was inaugurated with the purpose of nurturing leaders who will address global challenges and contribute to the peace and well-being of humankind. Here at the Jadavpur University, outstanding fellows have emerged from the Sylff program every year and I have been informed that they are already engaging in various activities to make for a better society. Nothing gives me more joy than to see the Sylff program serving an even greater role than it had initially set out for.
India is a country I hold dear to my heart. Out of the many places I travel to each year, I visit India the most. My last visit to Jadavpur University was in 2005, when I had the privilege to receive an honorary degree upon the university’s 50th anniversary.
The motivation that brings me to India many times a year is my work to eliminate leprosy and its consequences from the world. India, with the highest number of new leprosy cases, is a country that I have been putting extra effort in. Given the opportunity to speak in front of such a motivated group, today, I would like to share my personal experiences from my work to eliminate leprosy and its consequences.
Many decades ago, probably before most of you were born, I visited a leprosarium in the Republic of Korea. This encounter opened my eyes to a world I had hitherto failed to see; and it became my motivation to continue this difficult fight against leprosy.
Leprosy has been one of the most misunderstood and stigmatizing diseases known to humankind. Left untreated, it can cause external damages such as skin discoloration and deformities on the face, hands, and feet. Without a known cause, the appearance of the sufferers led many to believe that the disease was a curse or punishment from God.
When leprosy was identified as an infectious disease, countries around the world enforced isolation policies to prevent further infection. People who came down with the disease were taken from their families and banished to islands or other remote locations. The villagers whom I met at the leprosarium in Korea had suffered the same fate. They were completely shut out from the world, stripped of their dignity and living quietly, in eternal banishment.
I learned for the first time that people like them exist: people who have been marginalized and forgotten by the world; people who have been unable to speak from fear of discrimination; and people who have given up on speaking out all together after years of exclusion. I was alarmed by how much pain they had to endure, and how much hardship they had to suffer.
The advent of the multi-drug therapy in the 1980s transformed our fight against leprosy. Leprosy was no longer an incurable disease. With early detection and proper treatment, we could even prevent visible disability. Furthermore, in 1991, WHO adopted a resolution to eliminate leprosy as a public health problem, by reducing the number of cases to below one per 10,000 people at the national level. This clear target brought together governments, NGOs and other stakeholders. We at The Nippon Foundation took the initiative to provide MDT free of charge in every country for five years. To our amazement, this worldwide effort led to the cure of 16 million people in two decades.
Seeing so many people cured, I expected that needless segregation would end, people’s negative views toward leprosy would subdue, and people affected by leprosy would be released from centuries of suffering.
However, what I saw in various countries was something quite different. Although no longer confined, they were still living apart from the rest of society and prevented from doing the things that many of us take for granted such as going to school, finding work, using public transportation, and accessing public places such as hotels and restaurants.
This brutal reality brought back the memories of my first encounter in the leprosarium in Korea. It was then that the silent cries of the villagers that I had failed to hear then, resonated in my ears; and I understood the true nature of the problems surrounding leprosy: that curing people of the disease does not return their stolen dignity; and medical science alone is not enough to penetrate the invisible wall that society has built and fortified around those affected by leprosy, over many centuries.
This realization set me on a new path; and in 2003, I approached the Office of the UN High Commissioner for Human Rights in Geneva to deliver the people’s silent cries to the world. From there, the support from various countries, NGOs, associations of people affected by leprosy and other entities helped to draw world attention to the discrimination suffered by those affected by leprosy for centuries. After seven years of relentless efforts and with the support from various sectors and individuals, on December 21, 2010, the UN General Assembly adopted the resolution for Elimination of Discrimination against Persons Affected by Leprosy and their Family Members together with the Principles and Guidelines.
The principles and guidelines or P&Gs, state that person affected by leprosy and their family members should be treated as people with dignity and are entitled to all human rights and fundamental freedoms without discrimination on the grounds of leprosy. It also lays out specific provisions that governments should implement to this end, such as abolishing discriminatory legislation, removing discriminatory language from all forms of publications, providing the same range and quality of health care and promoting social inclusion.
Here in India, many people still recognize leprosy as grounds for divorce, and a reason to prohibit someone from standing for elections, travelling on public transportation, and obtaining drivers’ licenses. Helping to perpetuate this discrimination are various existing laws and regulations. Old laws which have remained on statute books, serve to only fan the flames of prejudice and discrimination against people affected by leprosy and their families.
To raise awareness of the resolution and urge governments to acknowledge and implement the P&Gs, we at The Nippon Foundation have been organizing a series of international symposia across the world.
These various efforts and more are all aimed toward changing the mindset of societies. However, eradicating deep rooted stigma caused by centuries of ignorance, prejudice and discrimination has proven to be a challenging task. To tear down the centuries-old wall that has loomed between people affected by leprosy and the rest of society, both sides must make the effort.
To this end, the people affected by leprosy have been making progress. Courageous leaders have emerged from our various development and training programs, and they are standing up to reclaim their rightful places in society. An excellent example is the National Forum of People Affected by Leprosy, here in India. 850 leprosy colonies from throughout India have networked to support people affected by leprosy to gain socio-economic empowerment. The forum also works to raise public awareness to eliminate stigma and discrimination.
These various initiatives have slowly but surely brought positive changes to the lives of people affected by leprosy. But prospects for the wall to come down remain elusive. From the side of society, we have been gaining support from leaders of various sectors such as religion, business, and education, but much more must happen from the other side of this wall.
That is why initiatives such as the annual visits that the members of the Sylff Association have been making to leprosaria every year, gives me hope. I am sure that the people in the leprosaria feel the same as well. I hope you will not only continue your visits to the leprosaria but also let your friends and family know about your activities and the issues surrounding leprosy. I have hopes that actions like yours from the grassroots are what can gradually change the mindsets of societies.
So this has been my journey. One full of twists and turns and dead ends and detours, but retrospectively, all of them were necessary experiences to get me to where I am today. Now as a person who has lived much longer than you, my advice is simple. As you pursue your paths, I want you to welcome the twists and turns and dead ends and detours that will come your way, because these are what will help you to uncover the true essence of your challenge and make all of the hardships that arise to that end, necessary, meaningful, and worthwhile.
So push forward, with strong determination, and address the diverse issues awaiting you to create a better society in the future.
I wish all of you Sylff fellows further success in your future endeavors and I wish the Jadavpur University many more successful years.