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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

GLOBAL APPEAL 2016: Youthful Perspectives

Panelists suggest what leprosy can teach — and what young people have to offer.

Wong: former patients are “role models”

“I’m a direct descendant of former leprosy patients. This statement is unthinkable for many of my peers.”

So began Joyce Wong, one of five panelists who shared their views on what the younger generation can learn from leprosy and how young people can help to end the stigma during a session forming part of the Global Appeal 2016 launch program.

Wong grew up in Sungai Buloh leprosy settlement in Malaysia and said there seems to be an unspoken sense of shame among many of the second generation. They feel unsafe to share their parents’ medical background with their friends or even with their spouse. “But is secrecy the answer?” she asked.

By not coming out and proudly declaring they are descendants of leprosy patients, they are not doing justice to their parents for all their parents have been through, she said.

Former patients deserve to be respected for battling and surviving the disease, Wong said. “They are role models for the younger generation in times of adversity; they should be seen as fighters, not victims.”

Joy in Action organizes work camps in leprosy resettlement villages in China. The camps are designed to improve the living conditions of residents, but they also offer valuable life lessons for the student volunteers who take part.

As the students live and work alongside the villagers, they learn to appreciate other points of view and develop new ways of communicating that they can apply in different walks of life. “This experience is quite important for young people,” said JIA Project Manager Yan Xunfang. “They learn a lot together with the villagers. They are a team.”

Young people also have a unique power that can be utilized when they are exposed to issues such as poverty and discrimination, she said. “Coming face to face with challenges empowers them to make change,” Yan said.

Aki Yasuda took part in work camps in China as a student. She is now vice president of Wappiness, an NGO in India modeled on the work camp concept.

Focused on communities of people affected by leprosy, Wappiness combines elements of work camp, employment support and education. “Our slogan is ‘Think together, act together and grow together,’” she explained.

Out of the experience of working with people affected by leprosy has developed the bigger goal of changing society. “When we first started, we wanted to create a world without discrimination; but that’s just bringing the negative to zero,” said Yasuda. “We need to enter positive territory, where all people live fulfilling lives and respect each other’s human dignity.”



Junior Chamber International (JCI), supporter of this year’s Global Appeal, was well represented in the discussions. JCI Brazil President Fernando Bildhauer admitted he was new to leprosy, but said he was here to learn.

“We are involved with a lot of sectors of society. I believe we can make a good commitment to make something happen in Brazil, motivate young people and create a sustainable impact. The first step is to teach JCI members about leprosy and the disease in Brazil, so later we can create a project.”

Olatunji Daniel Oyeyemi, president of JCI Nigeria, said young people have a critical role to play in his country and gave two examples of successful projects JCI has been involved with in the past year: a campaign for free and fair elections; and a campaign to raise awareness of lassa fever.

Speaking of leprosy, he said: “We can’t talk about this issue without talking about advocacy and enlightenment, getting young people involved and taking the message down to the grassroots. We have the numbers, the strength, the manpower, the network and the reach.”



“As young people we can no longer just talk. It is not enough to create awareness; we have to act and make sure we go beyond doing what is symbolic. This is not the end of our interaction; this is the beginning.”
— Arrey Obenson, JCI Secretary General