MAEBASHI, Japan - When Satoshi Kasai entered a sanatorium for Hansen's disease, he changed his surname to shield his family from discrimination. But he kept his given name, fearing he would otherwise lose his connection to his past.
More than six decades later, the 82-year-old is sharing his experiences with visitors to a museum in eastern Japan, hoping to raise awareness of the prejudice faced by people affected by the disease.
"I want as many people as possible to understand the past and present of Hansen's disease," he said.
Kasai is among four elderly residents taking part in a revived storytelling program at the Jyu-kanbo National Museum of Detention for Hansen's Disease Patients, next to the National Sanatorium Kuriu Rakusenen in Kusatsu, Gunma Prefecture.
The sessions resumed in January after a hiatus of about a decade, following requests from visitors who wanted to hear directly from those affected by the disease.
Born in Tochigi Prefecture, Kasai was diagnosed with Hansen's disease, also known as leprosy, at 14 and entered the sanatorium in April 1959 after graduating from junior high school.
With discrimination and prejudice against patients widespread, he changed his surname to protect his family from the stigma surrounding the disease.
"If I'd changed my whole name, I felt I'd lose touch with my past," he said of his decision to keep the name Satoshi.
After responding well to treatment with the drug Promin, Kasai left the sanatorium two years later and joined Japan's Self-Defense Forces, having found the job through a public employment office.
He served for over a year and a half but was forced to resign after his symptoms returned.
"I was afraid of the shame I'd face if people found out about my illness," he recalled. "I had no choice but to give another reason for leaving."
His health remained unstable, and he continued to move in and out of the sanatorium. When living outside, he spent many years working as a truck driver, choosing a job that involved relatively little contact with other people.
When friends asked what he had been doing in Kusatsu, he lied that he had worked as a manager at a traditional Japanese inn to conceal his illness.
He also endured unwanted attention because of a lasting effect of the disease that caused his eyes to water involuntarily. Children he did not know would sometimes point at him when he went out.
"I've always avoided places where people gather," he said quietly. "That's one of the hardships of living with Hansen's disease."
The museum's storytelling program had fallen dormant amid the aging of sanatorium residents and the COVID-19 pandemic.
Kasai said he finally felt able to speak openly because many of the relatives he had once sought to protect were no longer around.
"With fewer parents and siblings left, there's hardly anyone I might cause trouble for anymore," he said. "I thought it was finally time to talk about my past."
Kasai and three other residents in their 80s and 90s volunteered to share their experiences, working with museum curators to prepare their accounts. Eight sessions had been held by the end of August.
At a gathering in late August, Kasai spoke for nearly an hour to 10 visitors, answering questions about his life.
"I want people to feel the presence of those who lived here and suffered because of Hansen's disease," he told them slowly at the end of the session.
Machiko Shimada, a 60-year-old part-time worker from Kodaira in Tokyo, said hearing the experiences firsthand had left a powerful impression.
"Hearing someone speak about what they actually went through makes a huge difference," she said. "I want to raise awareness that these problems still exist today."
Museum curator Maki Kamata, who organized the program, said she had encouraged storytellers to speak freely so visitors could experience the atmosphere of the sessions, including subtle changes in their voices and moments when they struggled to find the right words.
Four more sessions are planned by March 2027, with free admission but advance registration required through the museum's website.
Kasai hopes to continue telling his story for as long as his health allows.
"I want to keep doing this while I'm still well enough, so people can understand the pain we've endured because of this disease," he said.
