My Journey with Leprosy
How a sufferer of Hansen’s disease emerged from isolation and devoted his life to advocacy
Lying in a hospital bed, José P. Ramirez, Jr. (b. 1948) almost lost everything because of a misunderstood disease. When the health department doctor gave him the Handbook for Persons with Leprosy, Ramirez learned his fate. Such a diagnosis in 1968 meant exile and hospitalization in the only leprosarium in the continental United States—Carville, Louisiana, 750 miles from his home in Laredo, Texas.
In Squint: My Journey with Leprosy, Ramirez recalls being taken from his family in a hearse and thrown into a world filled with fear. He and his loved ones struggled against the stigma associated with the term “leper” and against beliefs that the disease was a punishment from God, that his illness was highly communicable, and that persons with Hansen's disease had to be banished from their communities.
His disease not only meant separation from the girlfriend who would later become his wife, but also a derailment of all life's goals. In his struggle Ramirez overcame barriers both real and imagined and eventually became an international advocate on behalf of persons with disabilities. In Squint, titled for the sliver of a window through which persons with leprosy in medieval times were allowed to view Mass but not participate, Ramirez tells a story of love and perseverance over incredible odds.
"In 1968, at the age of twenty, Ramirez was diagnosed with leprosy and shipped to a 350-acre hospital at Carville, Louisiana, the only one of its kind in the continental US, where he was kept and treated for almost ten years. Despite significant medical advances (including the 1941 discovery of the ‘miracle drug’ promin), the pariah-like treatment of ‘lepers’ (a term Ramirez rejects) had not improved much in hundreds of years (when they were forced to view church services through an opening called a ‘squint’). Even his parents, devout Catholics, accepted a Biblical prognosis that suggested their son had been rendered ‘unclean’ because of their unwitting sinfulness. Still, Ramirez presents a heart-warming account of their support, along with his twelve siblings and wife-to-be, reflecting the mores of his tightly-knit Mexican community in Laredo, Texas. Ramirez also relates wrenching but inspiring stories of fellow patients—many abandoned by relatives and loved ones-who became his second family. During his illness, Ramirez earned bachelor’s and master’s degrees from Louisiana State University (in social work), and began to challenge the segregation of patients from staff at Carville. This outstanding, uplifting memoir by a remarkable man should captivate those interested in the intersection of illness, family, and religion. "- Publishers Weekly (starred review)