The Recorder - My Turn: A misunderstood disease

Thanks to Carole Gariepy for remembering the painful history of people diagnosed with Hansen’s Disease (aka leprosy) in Massachusetts a c...



Thanks to Carole Gariepy for remembering the painful history of people diagnosed with Hansen’s Disease (aka leprosy) in Massachusetts a century ago.

Massachusetts operated the Penikese Island Hospital from 1905-1921 and cared for about 40 patients total. Most were immigrants, originating from Cape Verde, Italy, China, the British West Indies, Turkey, Greece, Syria, Japan, the Philippines, India and Russia. Some of their names were Flavia, Wong, Hyman, Porfius, Nassem, Isabelle, Nicholas, Yee, Demetrius, Goon Lee, Hassan, Manueil, Fong, Getulio, and Iwa. Their stories are intimately humanized in Eve Rifkah’s graceful book of poems, “Outcasts” (2010, Little Pear Press).

Why Penikese Island, a remote, windswept, barren island in Buzzards Bay? Because the state hospital at Tewksbury, against the medical advice of the day, initially refused to accept a small number of Hansen’s Disease patients. And because the townspeople of Brewster also refused to let Massachusetts establish a leprosarium on the mainland. If nobody wanted them in their backyard, they would have to go somewhere that wasn’t in anyone’s backyard.

Fortunately the patients had Dr. Frank Parker and his wife Marion. According to one former patient, “The word ‘no’ was not in Dr. Parker’s vocabulary. Even when the patients’ wants were difficult to fulfill he would say, ‘I’ll see about it’ and he usually did. I remember many kindnesses. One that especially impressed me was that at Christmas time Dr. Parker himself would decorate our Christmas tree to make things cheerful.” When the last 13 patients left Penikese a century ago this month, bound for the newly federalized leprosarium in Carville, Louisiana, tears filled Dr. Parker’s eyes.

We should no longer call people with Hansen’s Disease “lepers,” a term which many in the community call “the L word.” Jose Ramirez Jr., author of “Squint: My Journey with Leprosy,” points out that “such hospitals [as Penikese] were primarily built because of stereotypes held by the medical community and general public about Hansen’s Disease as a fearful condition that required the banishment of persons affected by this misunderstood illness. This stereotype continues because references stigmatize us as ‘lepers’ rather than as individuals battling a bacterial infection.”

This October the Public Health Museum at Tewksbury will commemorate the centennial of the closing of Penikese with a symposium and exhibit. For more information please go to its website, www.publichealthmuseum.org, or visit it on Facebook or Instagram.

Paul Mange Johansen, a resident of Pittsfield, is the curator of “Hansen’s Disease (aka Leprosy): A Feared Infection” (exhibit, 2005-2006) and organizer of “Seminar of Disease and Stigma” (March 24, 2006), both at the Public Health Museum in Tewksbury. He is currently a biostatistician at Berkshire Medical Center in Pittsfield.



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Newsrust - US Top News: The Recorder - My Turn: A misunderstood disease
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