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Illness causes more than just physical isolation

| Tuesday, April 20, 2021

While isolation due to disease may seem like a new, pervasive issue that has erupted after the onset of COVID-19, the notion is not completely foreign to the colony of Kalaupapa. Located in Moloka‘i, Hawaii, this was the location for people exiled from the 1860s through the 1960s because of their contraction of Hansen’s disease, most commonly known as leprosy. At least 8,000 individuals were removed from their homes and placed on this sparsely-populated peninsula. While the quarantine was lifted in 1969, only six remained as full-time residents by 2015.

I first learned about this colony when I read the book “Moloka’i” by Alan Brennert. This historical fiction novel follows the story of Rachel Kalama, a young girl who grows up in Honolulu in the late 1800s. Once diagnosed with leprosy, she is exiled to the colony of Kalaupapa, where she learns to deal with rejection from society.

Those inflicted with Hansen’s disease were severely condemned around the world, so much so that the term “leprosy” has phased out because of its negative connotation. The disease causes skin sores, muscle weakness and even nerve damage. During the period of the 20th century when it was most widespread it was thought to be highly contagious, yet current doctors have disproved that prior belief. Today, it can be treatable with antibiotics.

This book has remained to be one of my favorites, so much so that I decided to write one of my supplemental essays for my Notre Dame application on it, describing why Moloka’i should be on every school’s reading list. What has stuck with me the most from the book was its emphasis of hope during periods of despair — in the words of Alan Brennert, being “surrounded by darkness yet enfolded in light.”

Before reading this book, I never knew of the exile of lepers in Hawaii, let alone the fact that the colony still exists today. This novel reminds us of the lost voices in history, those who aren’t regularly included in a core school curriculum. While it does reveal the intrinsic challenges of coming to terms with a chronic illness, the book serves a more important role in creating more empathetic beings and citizens of the world.

While I submitted my supplemental essays for Notre Dame before the onset of COVID-19, the book that I mentioned in my application has grown increasingly relevant, and reminds us of the painful repercussions of isolation and stigma when it comes to health.

Another favorite book that covers this intricate topic is “The Samurai’s Garden” by Gail Tsukiyama. The novel follows the story of Stephen Chan, who leaves his home in Hong Kong to recover from tuberculosis at his family’s summer home in a village in Japan. However, the contraction of tuberculosis, much like leprosy, was associated with a wrongdoing on the victim’s behalf.

While contracting an illness or disease can cause physical isolation, I’ve realized that more than anything, a sense of societal and emotional separation occurs as well. For diseases such as COVID-19, contraction of the illness may cause some doubts on whether or not the victim was being careful around others. With illnesses such as leprosy, which has rich descriptions in the Bible, there was also a sense of retribution that came with its contraction during the 20th century, as though the inflicted person somehow deserved the disease.

Even more isolating than physical diseases are those of mental illness, including neurasthenia, the illness with which the narrator is diagnosed in “The Yellow Wallpaper” by Charlotte Perkins Gilman. She is constantly belittled by her husband John, who doubly serves as her doctor. Her treatment consists to do nothing active, especially working and writing, which she disobeys. While many in quarantine after contracting COVID-19 have taken up new creative hobbies in order to improve their mental capacity, the narrator in “The Yellow Wallpaper” is restricted to her own thoughts, which run wild upon its fixation on the yellow wallpaper, a representation of the societal oppression of women.

When I first read these books years ago, I was surprised at the way these people were outcast despite their serious illnesses. However, I believed that such lack of empathy was the result of past ways of living, and that similar patterns would not repeat themselves in the 21st century — but I was mistaken.

Stigma has been prevalent throughout the COVID-19 pandemic as well. In Mexico, medical workers were denied access to public transport and sometimes were physically assaulted due to their efforts of aiding COVID-19 patients. In India, medical staff experienced social ostracism, many being asked to evacuate rental homes. Such stigma and social isolation may be linked to the “high infectivity of the virus,” according to Diptendra Kumar Sarkar, a professor of surgery and COVID-19 strategist in the Institute of Post-Graduate Medical Education and Research in India.

Such deliberate attempts to not only outcast those inflicted with COVID-19, but also workers who aid those that have contracted the disease, are the result of misunderstanding and unscientific beliefs. Instead of breeding a culture of respect and admiration for the individual person, as a society, we have grown to condemn others.

While physical isolation from COVID-19 may take two weeks, the social and emotional isolation that results from the contraction of diseases is far more pervasive. Instead of pointing figures, we should be caring for the person, regardless of the actions — or lack thereof — that led to that point. Let’s not only flatten the curve, but deconstruct the stigma of illnesses. Only then will we achieve the unity that we seek in a highly-fragmented world.

Elizabeth Prater is a first-year student with double majors in marketing and the Program of Liberal Studies. In her free time, she manages her Goldendoodle’s Instagram account (@genevieve_the_cute_dog) which has over 23K followers. She can be reached at [email protected] or @elizabethlianap on Twitter.

The views expressed in this column are those of the author and not necessarily those of The Observer.

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