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

By Emily Alford | March 29, 2021 | 5:30pm

In Depth

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

Image: (AP Photo/Susan Sterner)

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.”

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That location was a former plantation on the banks of the Mississippi River, so dilapidated in 1896 when the Catholic Daughters of Charity of St. Vincent de Paul began caring for patients and living 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 were stripped upon arrival of any freedoms they would have enjoyed outside. Forbidden to marry or vote, men and women were housed behind a barbed-wire fence in separate wards, permitted only to interact on “dates” over card tables placed in the doorways of the patients’ room, which kept men respectably in the hallways while women remained in their quarters. Within a year, Edwina Parra had renamed herself Betty Parker to avoid bringing the stigma of leprosy to her family in the city and her handsome fiance had broken off their engagement.

“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 memoir Miracle at Carville.

Though 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. During the decades she passed there, Betty became an outspoken advocate for patient’s rights at Carville: the right to retain their humanity within a government institution, the right to be respected as humans rather than stigmatized as lepers, and finally, the right to remain at Carville, which had become the only home many patients ever knew, in her old age.

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. They were each jailed for 30 days as punishment for their escape.

In the following decades, Betty worked as a nurse’s assistant to the nuns for $30 a month and wrote for the patient newspaper The Star, which acted not only as a connection between those at Carville and their families on the outside but also as a means of patient protest over federal changes that threatened to strip patients of the small community of homes they’d managed to build on the grounds with pilfered materials, where married couples and those who did not wish to live in the dorms could exist independently. The buildings had been long-tolerated but never fully sanctioned, and near the end of World War II, stricter hospital management threatened to take them away entirely.

“Why am I not free,” Betty wrote in the July 1945 edition of The Star as part of what would become a successful patient-led campaign to earn the right to live independently in patient cabins on the grounds, marry, and vote. “Why am I, an American denied my rightful heritage—liberty, justice, and the pursuit of happiness, when my only crime is being sick?”

Still writing under the name Betty Martin, she became a patient advocate on a national scale and bestselling author with the book Miracle at Carville, about breakthroughs in treatments for Hansen’s disease during her time at Carville, and a follow-up, No One Must Ever Know, about living with the stigma of leprosy. But once Betty and her husband were discharged and living independently, her friends and neighbors never knew about the important and influential work she’d done battling the stigma of Hansen’s because she lived her life outside Carville as Edwina so that, true to her book title, no one would ever know what she had suffered.

Because Harry could never fully explain the gap in his employment history without giving himself up as a leper, the pair bounced around in the outside world, often struggling financially, occasionally moving back to Carville for treatments and then moving back for good in their old age. In 1999, at 90 years old, Betty once again led patients in protest, this time to force the U.S. to honor their promise of allowing those sentenced to a life at Carville to live out that sentence, remaining in the hospital they’d come to call home until they died.

In 1945, Betty wrote a poem called “Yearning,” which featured a refrain stating her longing for “A place to call my very own,” and while she and Harry did own a home of their own for a brief time with the proceeds from her memoir, it was Carville where she eventually fought to stay. “This is a beautiful day for victory,” she said as their march concluded at the Carville cemetery and the patients buried scraps of paper inscribed with words like “stigma,” “labeling,” and “unfounded fear.”

Once again, the protests were successful; Carville closed its doors as a medical facility that same year, while allowing its residents, some of whom had lived there more than half a century, to live out the rest of their able-bodied years in the homes they had made within its walls. Betty died in 2002, having finally won the right to claim Carville as her own.