The ‘Lepers’ Who Demanded the Right to Be Treated as Human

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In 1927, Edwina Parra was leading a charmed life as a 19-year-old debutante engaged to be married to a handsome young medical student. But all it took to break that charm was a small, stubborn rash on her upper thigh. After two doctors examined the spot and diagnosed Parra with Hansen’s Disease—better and known as leprosy—she surrendered herself to The National Leprosarium of the United States, which was established in Carville, Louisiana in 1921, as per state law, which mandated that anyone diagnosed with the disease would be quarantined within a “selected location.”

In 1927, Edwina Parra was leading a charmed life as a 19-year-old debutante engaged to be married to a handsome young medical student. But all it took to break that charm was a small, stubborn rash on her upper thigh.

in the former quarters of enslaved sugar cane farmworkers, the nuns had to sleep with hatchets to stave off the water moccasins that crept up their bedposts at night. By the time Parra arrived, the hospital was run by the United States Public Health Service in conjunction with the nuns. The snakes were now under control, but the patients wereof any freedoms they would have enjoyed outside.

“Starving people, it is said, dream of food, and in Carville, we dreamed of motion, of getting on busses, trains, planes, anything that moves and goes anywhere,” Betty wrote in her bestselling 1950 memoirThough she only intended to be at Carville a short while, six months or so, Betty would live within the confines of its barbed wire fence, off and on, for the rest of her life, as did many of the hospital’s residents.

By 1933, Betty had met and fallen in love with another patient, “Harry,” also confined to Carville as a teenager. One night, they confessed their “real” names to each other; soon after, they crept through a hole in the barbed-wire fence to run away to New Orleans to be married. But after five years living in secrecy in New Orleans, Harry’s symptoms returned, and though she was asymptomatic, Betty returned to Carville with her husband.

Still writing under the name Betty Martin, she became a patient advocate on a national scale and bestselling author with the

 

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