Carville’s Cure: Leprosy, Stigma, and the Fight for Justice

This is the story of Carville, a leprosarium harboring those who contracted Hansen’s disease and who were forced by the fear of society to live in isolation on the estate of an abandoned mansion in rural Louisiana. Early in the twentieth century, successive communities rejected the plea for accommodation until Carville reluctantly served patients until antipathy was replaced by understanding and cure, and the doors closed in the late 1990s.

As patients arrived and changed their names to avoid shame to their families back home, efforts pushed forward to alleviate symptoms of the disease and to reduce the prison-like surroundings which left the first patients living and dying in derelict slave quarters, unable to vote, leave the premises, enjoy gender-mixed social events, or even co-habit with spouses. Until research led to the discovery of sulfones, treatment relied primarily chaulmoogra oil, extracted from a tropical Asian tree.

In their different ways, three parties contributed positive efforts, enabling residents, some there for decades, to live fuller lives. The Daughters of Charity at Carville added research to their nursing skills, combining strictness with kindness. The American Legion repeatedly supplemented government funds, including monies for a recreation center. Saul Stein, a patient arriving in 1931, launched The Star, reporting all the goings on at Carville including accounts of medical progress, tales of absconders and troublemakers, complaints, and improvements. He saw the circulation spread far afield despite severely disabled hands and total blindness.

Until last 2019, Louisiana leprosarium and its residents seemed to belong to a distant past. But with the arrival of Covid-19 in 2020, it is easier, though no less repugnant, to comprehend the earlier tragedy of Hansen’s disease. Pam Fessler, a longtime writer for NPR, added poignancy to the history, revealing that her husband’s grandfather came to Carville as a 15-year-old patient. The pages are alternately distressing, buoyant, and rewardingly informative.