Exploring Leprosy Tourism
An Adventure A Week
It was mid-morning and I had just finished my breakfast of fruit and bread. I was on the Philippine island of Culion, which was once the world’s largest leper colony.
Culion was divided into leproso (leper/leprous) and sano (clean) sections. The “clean” side of the island is where non-afflicted healthcare workers and colony administrators had lived. The other side had housed the patients.
That day I set out to explore, striking out before the sun and heat became relentless. I left my hotel and walked down a dirt road, heading toward the leproso cemetery. I was curious to know whether the unequal treatment of the leproso and sano populations endured even in death.
Hotel staff repeatedly advised me to take a rickshaw for my morning trek, warning me that the cemetery was too far away. But with a long day free to explore, I decided to set out on foot anyway. Promptly getting lost, I was wandering about when Auntie Claire spotted me.
She was sitting in the doorway of a simple three-room house eating her lunch of rice and fish, sharing tidbits with her scrawny cat. Realizing I was adrift, she called me over and invited me into her home for tea.
Auntie Claire suffered the horrible affliction of leprosy, now known as Hansen’s Disease. The disease scarred her face, hands, and feet, leaving her without most of her fingers, some of her toes, and portions of her face.
Auntie Claire had spent sixty-five of her seventy years on Culion. When she started showing early signs of the disease, her parents abandoned her at age 5 to the care of a Carmelite order of French nurse nuns who ran the sanitarium.
Auntie Claire lived in the girls’ dormitory until she was 16 years old, chafing under the nuns’ strict rules. Her days were filled with praying, attending church, and saying the rosary.
Auntie Claire eventually escaped, got married, and raised 10 children: 9 girls and a single boy. Her husband left her for another woman 38 years ago, which she considers a blessing since he was a drunkard and cruel to the children.
Auntie Claire now shares the house with one of her daughters, with her son living close by in the village. All of her other children have left, feeding the famous Filipino diaspora that sends millions of workers all over the world. Several of her girls are working in the Gulf; one an engineer, another an accountant.
Though free of the disease for many years now, like many of the colony inmates (as they refer to themselves), Auntie Claire decided to stay on the island. After more than 50 years, the island prison had become her home.
Culion initially interested me because of its historic contribution to the field of medicine. I was curious about the inmates and their lives. I had originally heard of the island from my friend Rick, a former Peace Corps volunteer in the Philippines.
I have never met Rick, but he is very active on my Facebook page. This connection was all I needed to heed his suggestion and plan my entire time in the Philippines around a visit to the island’s budding eco-lodge run by Jesuit priests. Hotel Maya, where I stayed, is a youth training center providing job skills in the tourism industry.
I never figured out what the hotel’s “eco” angle was exactly; perhaps it was considered “green” since it only had electricity from 6:00 p.m. to 10:00 p.m. and no hot water. But it didn’t matter. The young staff at the hotel were full of smiles. Of course, they had time to be friendly—I was the only tourist on the island. Leprosy tourism wasn’t exactly thriving.
I ate alone at the hotel’s restaurant each night. The hotel staff set my place at the table, not facing the open window and the scenic bay as I would have preferred but directly across from a picture of The Last Supper. For three nights in a row, I ate my pre-ordered meal of pork chop and rice in front of Jesus and the twelve Apostles. They were good companions.
I spent my days on the island quietly reading books on the colony's history and visiting the local museum. I watched a very informative film and studied pictures of the inmates as well as the doctors and nurses who cared for them. I tried to absorb the details of their faces, to see what they were thinking and feeling as they lived out their lives in this island institution.
I became fascinated by the internal society that the inmates had created, forming their own police force and musical band. Island inmates also served as teachers in the school, and many were nurses who helped to care for their fellow patients.
As usual, I did no research before setting off for my island destination. I merely showed up at the dock and hopped in the small wooden boat that Hotel Maya had arranged for me.
It was during the two-hour bumpy boat ride to Culion that I noticed my two escorts—a young lad from the hotel and the captain—were missing a few of their digits.
This observation gave me pause. Only then did it dawn on me that I was going to a former leper colony. Uncharitable thoughts entered my head, such as “They have cured leprosy, haven’t they? I mean, they wouldn’t promote Culion as a tourist destination if the disease still exists, would they?”
I wish I’d thought of these questions the day before when a quick online search would have provided some helpful answers. But too late, I was left to wonder during the remainder of the boat ride—and to wonder silently, since I was too embarrassed to ask. It was a long ride.
To my great relief, I learned that the cure for Hansen’s Disease had been found in the mid-1980s. A treatment called Multiple Drug Therapy (MDT), developed by researchers on the island and tested on Culion patients, was found to not only cure the onset of the disease but also to reverse the symptoms.
Patients took a regimen of pills each day and their lesions abated. If a patient was found to be lesion-free for two years, they were considered cured and allowed to leave the colony. In 1999, the World Health Organization declared leprosy eliminated on Culion, finding that less than one in 10,000 cases existed.
It’s amazing to me that a few pills swallowed each morning could eradicate this disfiguring disease that had tortured so many for so long.
During my time at the colony, I became impressed with the role that the Culion inmates and doctors had played in finding a cure. I strived to put a face to the science and to understand the sacrifices the patients had made.
I learned a lot during my time on the island. I now know that leprosy isn’t hereditary nor is it easily communicable. Less than 10% of the world’s population is even capable of catching the disease.
Those who did contract the disease in the past most likely had a predisposition that was exacerbated by malnutrition and unsanitary conditions. These physical hardships were compounded by the emotional trauma of the disease. To be shunned and cast out by your community is a horrific experience to endure.
I also learned that the leper colony of Culion was created during the American occupation of the Philippines in 1898. At the time, leprosy was ravaging the Philippine islands, with more than 25,000 people infected. The American solution was to set up a reservation modeled after the leper colony founded by Father Damien on the Hawaiian island of Molokai.
In 1906, the American colonial government formally opened the Culion Leper Colony and passed a segregation law on leprosy that authorized the systematic collection and forced segregation of all persons afflicted with the disease.
Medical personnel and police would patrol the Philippines looking for the telltale signs of disfigurement. The afflicted, many of whom ran into the hills to escape capture, were hunted down. Babies were taken from their mothers. Children were separated from their families for life. Once apprehended, those already suffering were banished to the Culion prison—the penultimate purgatory.
The colony, first run by the Carmelite nuns, was later administered by Jesuit priests. Both religious orders enforced strict governance. Marriage was forbidden among the inhabitants. Well, forbidden until 142 babies were born in one year. This out-of-wedlock coupling scandalized the nuns and priests, and they finally gave in and legalized marriage in the colony if only to save their patients’ souls.
During the twentieth century, the world still thought that leprosy was highly contagious and that lepers had to be segregated from the rest of society. Not even parents and their children were spared.
New parents on Culion were only able to keep their children for the first few months of their lives. Once the babies reached the 6-month mark, they were removed to a hospital ward to be raised by nurses until it was determined whether or not the children carried the disease.
During this enforced quarantine, parents could visit their children only once a week and view them through a glass pane. No touching was allowed, lest the parents inadvertently infect their children.
At the age of 6, the children were tested for signs of the disease. If there were positive signs, the children were returned to their parents. If not, the children were permanently relocated to an orphanage called Welfareville in Manila, never to see their family again.
There was no joyous outcome for the parents. Either your child had inherited the disease or your child was taken away forever. A true tragedy.
This quarantine and forced removal of children is just one of many indignities that the Culion inmates suffered. The patients were also made to undergo experimental treatments, not all of which were successful.
Culion patients played an instrumental role in finding a cure for their dreaded disease. It was their sacrifice of submitting themselves to rigorous research and testing that paved the way for a successful treatment and cure for leprosy. This took incredible courage.
During my time on Culion, I discovered a clear message of hope: that cures for terrible diseases can be found; that people can survive and even prosper despite deplorable conditions and inhumane treatment; that a shunned culture can reinvent itself as an island get-away of a better kind.
I consider my time spent in Culion a gift. I gained insight into a private world and took tea with a true survivor. Hearing Auntie Claire’s life story was worth the trip itself. As I prepared to set off after our visit, she gave me a final piece of advice: “Take a rickshaw to the cemetery.”
This time, I listened. 🦋
What do you think about this type of tourism? Is it appealing to you? Do you think it’s exploitative or important to know history and understand culture?
⭐ An Adventure A Week is a serial based on my autobiography “Adventures Of A Nomad: 30 Inspirational Stories.” You can read the essays in order (or not). Can’t wait for the next installment? Get the book.
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Christened “Wander Woman” by National Geographic, Erin Michelson is a professional speaker and author of the Nomad Life™ series of travel books and guides, including the #1-ranked “Explore the World with Nomads.”