Tang Hsiang-ming (湯祥明) was forcefully institutionalized when he was 19. A promising student at Taipei Municipal Chien-kuo Senior High School, the nation’s top educational institution for boys, he’d been diagnosed with Hansen’s disease, also known as leprosy. Ostracized by his family and community, he was taken to the Losheng (Happy Life) Sanatorium (樂生療養院) in 1951 in what is present-day Sinjhuang District (新莊), New Taipei City (新北市).
But the sanatorium was never a place to cure those suffering from the disease. It was meant to segregate them from the rest of society.
“[We] were left to perish,” Tang says.
“In the early days, the main gate was guarded by a police officer. Closer to the building complex, there was another sentry standing on guard who would fire his rifle into the air if a patient walked toward him,” he recalls.
Back then lepers were interred at Losheng against their will. Today they face the opposite problem: the forced eviction from many of the sanatorium’s buildings because the Taipei City Government wants to construct a Mass Rapid Transit (MRT) maintenance depot on the site. This time, however, the Hansen’s sufferers aren’t taking the forced destruction of the country’s only public leprosarium without a fight.
HOME SWEET HOME
On a summer day in 2007, a group of former patients led a 6,000-person rally organized by preservation activists, calling on the government to stop the planned construction of the maintenance depot. Almost six years on, campaigners have taken to the streets again, but now most of the sanatorium complex has already been demolished. Landslides, caused by the ongoing construction work, have also caused large cracks in the remaining buildings. Though the residents persist, they appear aged and exhausted.
“Losheng is our home. As long as I breathe, I will continue to fight,” says Chen Tsai-tien (陳再添), who was forcefully removed from his home in 1952 at the age of 16 after he was diagnosed with Hansen’s disease. He has lived in Losheng ever since.
Losheng Sanatorium began operating in the winter of 1930 under the Japanese colonial government. It was designed to segregate leprosy patients from society as a way to control the disease. Under the empire’s leprosy prevention law, patients were subject to compulsory isolation, forced sterilization and abortion.
The Chinese Nationalist Party (KMT) government continued the policy of forced isolation when it came to power following World War II. Those with leprosy were taken into custody, handcuffed and transported to the leper colony. Those who attempted to evade authorities usually failed because neighbors were encouraged to identify and report those suspected of having the illness. Many Losheng residents, now in their 70s and 80s, remember this early period as a time of darkness, as hunger, fear and death stalked the leprosarium.
Lee Tien-pei (李添培), who was admitted to Losheng in 1949 at the age of 15, says that when he first arrived, each leper was given a food allowance amounting to little more than NT$10 a month, hardly enough to live on. They were consequently forced to scavenge for dead farm animals to get by.
Medical treatments barely existed. Painkillers were among the few medications handed out. To make matters worse, Lee says, the clinic was staffed with unlicensed nurses and doctors who often conducted forced clinical trials resulting in permanent injuries or death.
“Some of the doctors working here had previously served in the Japanese army … We hated the medical staff because they treated us as if our lives were worthless,” says Tang, who once saw a fellow resident die of excessive bleeding after a throat operation.
Sulfone drugs were found to be effective in the 1940s, and it was proved that leprosy was not infectious once treated. The improper administration of the correct medication Dapsone, however, came with consequences.
“The doctors didn’t know the proper dosage of the drugs and gave us no instructions on how to use them. We were given 21 pills a week, and each pill was 100 milligrams. So we took 2,100 milligrams each week. But 25 milligrams was the correct daily dosage,” Lee says. “Our bodies collapsed because the drug destroyed red blood cells. It also caused severe nerve pain.”
Lee recalls how many found the pain unbearable and committed suicide. Some consumed large quantities of Dapsone and slowly and painfully died of the complications. Others hung themselves in a corridor that faces the compound’s main gate in the hope that their souls could leave the sanatorium after death.
“Every day, people were killing themselves,” Tang says.
Little by little, residents learned to administer the proper dosages and feed themselves properly. The medical situation improved when “real” doctors started to arrive in the 1960s, says Lee.
Designed for lifelong isolation, Losheng had everything needed for a self-contained community: generators, laundry facilities, a canteen, a barbershop, a communal bath house, a library and a tile factory, as well as two churches and a Buddhist shrine designed and built in 1954 by residents.
The deep-rooted fear of leprosy as a hereditary, highly contagious and incurable disease meant that even “the patients’ ashes were not allowed to leave the sanatorium,” says Tang. Residents performed the funeral rites and the deceased were cremated in the compound’s columbarium.
Life inside Losheng was closely watched by leprosarium authorities which was given the power to arrest and punish residents without court order. Those who dared to sneak out or disobey staff members were placed in solitary confinement.
CARING FOR EACH OTHER
Humiliated and cast out, residents turned inward and learned to take care of each other. Many like Lee worked at the understaffed clinic to help fellow residents who were disfigured, partially paralyzed or suffering from nerve pain which “was so severe it caused fingers to curl overnight,” explains Tang.
Extensive nerve damage meant that they lost the ability to feel pain. Inhabitants were injured repeatedly as they didn’t flinch when they cut themselves or picked up a cup of boiling water. If not treated properly, injuries would leave them deformed or in need of amputation. Some went blind, another debilitating side effect of the disease, while others developed mental disorders.
Lan Tsai-yun (藍彩雲), a former patient who has lived in Losheng for nearly 60 years, spent most of her time in the sanatorium serving as a caregiver for the blind and the elderly.
“Back then, no one had money to hire caregivers, so those in better health took care of the less fortunate. It was a 24-hour task. I woke up, made a fire, boiled water, fed them, bathed them, changed their dressings, cleaned the house and put them to bed. I even had to pour some a glass of water because they couldn’t see,” says the 80-year-old Lan.
Lan now lives with 92-year-old Lin Chueh (林卻), who vowed to be with her caregiver and life-long friend until the day she dies.
Despite the lifting of the quarantine in 1962, throughout the 1960s and 1970s Losheng residents were prohibited from leaving the complex without permission. And, in order to go out, they had to make “special deals” with those in charge of the resident’s care.
“You had to bribe them — give them your food allowance and gifts,” says Tang.
Though not all keepers were “corrupt,” most of the remaining residents tell stories of how they were taken advantage of by their supposed guardians. Chou Fu-tzu (周富子), who was sent to Losheng in 1960 when she was 17, says mistreatment and prejudice against the patients were also common among medical professionals.
“It was hurtful to see the nurses afraid of touching the door knob or using pincers to pick up our prescription slips to avoid ‘the dirty bacteria,’” Chou says.
Outside, a hostile world awaited the sufferers, as years of segregation and false propaganda fostered discrimination and unfounded fears. Residents were refused service in restaurants; those who sought employment outside were forced to keep their life in Losheng a secret.
“Companies and businesses didn’t want us. They knew we were from the ‘dirty place’ once they saw [the address on] our ID cards,” Tang says. “We could only do manual labor, odd jobs.”
Residents internalized the stigma. Lee, for example, turned down an opportunity to work at Taiwan Power Co. (Taipower), fearing that people might find out about his condition.
Chen and Chou chose to eke out a living by helping out at the sanatorium. They also earned extra money raising and selling puppies, rabbits, chickens and other animals.
NO KIDS ALLOWED
Though it was tough to make a living outside, returning home was never an option for residents. Many were seen as a burden on their families, while others were simply abandoned.
“Fearing that others might find out that a relative had leprosy, family members would cut contact with them,” Tang says. “By the time the quarantine was lifted, families had moved and those infected with leprosy no longer knew where their homes were.”
Residents recall how the diseases stigma brought shame and ruin to their parents and siblings. In Lee’s case, his parents were forced to shut down their businesses in Hualien and went bankrupt because of the family’s association with leprosy.
Lee started his own family with a fellow leper, and in 1979 the couple had a baby daughter. When Losheng authorities found out they gave Lee an ultimatum: Have a vasectomy or get kicked out of the sanatorium.
“Residents weren’t allowed to have children during Japanese colonial rule. In the 1960s, forced abortions ceased, but we were still not allowed to raise kids,” says Lee.
Infants born to infected parents were either sent away to a nearby children’s home or, if the parents decided to keep the child, hidden from Losheng officials.
Chou’s oldest daughter was taken away as soon as she was born. She only returned to the sanatorium to live when she reached high school.
“Once in a while, the clergyman’s wife would bring our babies to the chapel for us to see. When the children grew older, we were allowed to visit them at the children’s home,” says Chou.
The discrimination that lepers were subjected to was also felt by their children, who were forced to face insults and bullying when growing up.
“Even today, there are residents who don’t want others to know about their children, fearing that it may bring them trouble. There are also people who don’t want friends and co-workers to know about their parents and their lives at Losheng,” says Chen.
The second part of this feature will appear in tomorrow’s edition.