He and Magdalena moved to Houston in 1976. Since then, José has worked for the Mental Health and Mental Retardation Authority of Harris County, while Magdalena has put in a long stretch at the Veterans Administration. They live in Braes Heights. Carville officially closed in 1999, and the old hospital now houses the National Hansen's Disease Museum. (Today, leprosy's official name is Hansen's disease, in honor of the Norwegian scientist who first discovered the leprosy bacterium.) José makes frequent trips back. Fifteen residents still live there, older people who were allowed to stay because they had nowhere else to go when the hospital closed. They still call José "son" when he comes to visit.
Today, José is a world-renowned advocate for people with leprosy specifically and a recognized expert on the concept of stigma in general. He has won humanitarian awards in several countries and at the United Nations, serves as the managing editor of The Star (a journal focusing on leprosy studies) and travels the world making presentations. "I tell people that I charge a huge fee. They ask what it is, and I tell them that in the next month they must educate ten people, be it their family or their friends, strangers, whatever, and tell them the truth about leprosy and the L-word and how stigmatizing that is."
On the subject of stigma, few are better qualified by experience. "My identity was challenged constantly," he says, remembering all the many and varied taunts he has endured. "Looking back, I realized that out of all of those labels, the one that caused me the most pain was the L-word. That's because you are a nonperson.
"When you spell it in reverse it's 'repel,'" he points out. "It's a stigma, label, a tattoo that doesn't go away. With HIV and AIDS there was a great deal of stigma, to the point where people who were diagnosed with HIV would say, 'I am being treated like a leper.'"
As Magdalena puts it, José's father did a wonderful thing when he acknowledged his son's worth as a human being at the same time he confirmed his illness and that José was living in Carville.
"It was the best thing they could have done," says Magdalena. "They said, 'This is for the world to know. We are not gonna keep this hidden.'"
Earlier this year, José published his memoir, Squint: My Journey with Leprosy. Since then, José has seen his profile rise dramatically. There was a lengthy interview on NPR and numerous positive reviews. Rita Wilson, a Hollywood producer and the wife of Tom Hanks, is said to be considering a possible film and/or HBO series treatment, and other filmmakers are also intrigued — some by José's story on its own, and others by the window he opened into the world of Carville and leprosy in America. That's all great, José says, so long as people get his message. "It's wonderful that my book was published, but I never intended it to be a book," he says. "I intended it to be a manuscript for me and my family. It's great that there is a possibility of a movie, but we never looked at it in that fashion. I just wanted to fight the stigma of leprosy and the other labels."
In July, he held an official Houston book signing at, of all places, his old-fashioned Braes Heights strip-mall barbershop, for no other reason than that he liked his longtime barber. The event was packed with friends and well-wishers, who grazed on finger sandwiches and Spanish tortillas prepared by José and Magdalena's daughter Erika, who was fresh back from a stint as an English teacher in Spain. Their son J.R. manned the book table and took cash for copies of Squint. There was free beer and wine, and a cheery mood pervaded — it could have been a party celebrating a win in a local election rather than one man's triumph over a dread disease.
