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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

FEATURE: A Trinidadian Tale

Documenting a family's odyssey with leprosy.

Virginia Samuel being interviewed by her nephew Rudy. See a clip on www.youtube.com/watch?v=SyFCZq821RE

As a filmmaker working in the United States, I've mainly been interested in creating documentaries that give voice to the underserved, misunderstood or marginalized members of society. This has led me to produce films on the migration of young, poor, black women from the rural South to Northern cities during the turbulent 1960s, the role of racism in the strained relationship between black males and the police, and the challenges that face inner-city youth in high schools today.

I've come to realize that my biggest inspiration and influence in choosing this path has been my aunt Virginia, a person affected by leprosy, and thus the reason for my most recent undertaking, titled "Hansen's Disease: A Family's Odyssey." This work-in-progress chronicles a family's struggle to deal with the misconceptions and stigma associated with the disease, from the perspectives of my aunt and family members, with additional insights from two other persons affected by leprosy.

I grew up in Trinidad. It was there that Aunt Virginia, my mother's sister, was diagnosed with leprosy as a teenager and sent to a leprosarium on the island of Chacachacare (pronounced "shack-ashah- carry"), an hour-and-a-half boat ride away.

From childhood through my teens, I visited Aunt Virginia and Uncle Shurali, who also had leprosy, on the secluded island off the coast of Venezuela. My brothers and I would go on weekends, and also spent the summers there. I have happy memories of swimming, eating, fishing, daydreaming, playing billiards and interacting with my aunt, uncle and the other patients. We didn't see them as being any different from the folks in our neighborhood back home.

My aunt and uncle had four daughters, and I wondered why my cousins didn't live with their parents. Later, I found that all four babies had been taken away at birth and given to my grandmother to raise. This was just one example of the injustices and indignities suffered by people affected by leprosy during this time, and one that sowed the seeds of subsequent family divisions.

"We are blessed to have someone like my aunt who can teach us life lessons."

Like many people with the disease that I've come to know, love and respect, my aunt and uncle never exuded any bitterness or self-pity. Rather, they had sunny dispositions and always sought to help others in need. They both maintained a strong belief in God and the Catholic Church, even though the church contributed to some of the misconceptions about the disease. In Sunday school and the regular Sunday services my family attended, it was brought up on occasion that persons afflicted with leprosy were sinful and unclean, and were being punished by God.

In the late 1960s, the government started mainstreaming people affected by leprosy into the general population in Trinidad, and gave my aunt and uncle a home. But the stigma surrounding leprosy remained, and was something I witnessed first-hand. Going anywhere with my aunt, I saw the scorn and contempt in people's eyes, and had a hard time understanding why they didn't see the beautiful, caring person that I knew and loved. Even her own mother and sister were ashamed of what people thought, although they loved her dearly.

Although my family subsequently migrated to the U.S., these experiences have always stayed with me. In making this documentary, therefore, I wanted to give a voice to my aunt and others like her. And through her story, I also wanted to address how leprosy affected my family, in particular the difficulties Aunt Virginia faced reestablishing relationships with her children. For my part, I believe we are blessed to have someone like my aunt who can teach us life lessons about the resilience of the human spirit, and should thus make a conscious effort to offer our understanding, support and compassion.

Finally, I hope the film will put to rest misperceptions about this completely curable, mildly infectious disease that unfortunately persist. As Aunt Virginia says, "It's time people realize and don't treat people who suffer with this disease as if they're cast out. It's not like Biblical days."

AUTHOR:Rudy Hypolite

Rudy Hypolite works as a producer, director, and editor of content produced for Harvard University's multimedia website.