Lucy Eum
New Brunswick, Canada

 

The wooden operating table used for vasectomies and sterilizations. Photo by Lucy Eum. 2012.

Hansen’s disease, also known as leprosy, has historically been a highly stigmatized condition.¹ For centuries it was thought to be a curse, a punishment for sin, or a hereditary disease.² It was not until 1873 that a Norwegian scientist, Gerhard Henrik Armauer Hansen, discovered the bacterial cause: Mycobacterium leprae.³ While Hansen’s disease is now curable, there is still a global incidence of 250,000 annually, as well as remaining stigma and prejudice.¹

Because of nerve damage, permanent disfigurement and secondary infections may result from unnoticed and untreated wounds. Loss of limbs may result from reabsorption of affected digits or surgical amputations.³ While the infection is curable, treatment cannot reverse existing physical disfiguration.¹ Fear of transmission adds to stigmatization,⁴ even though more than 95% of the general population has natural immunity to the infection and transmission is only possible with prolonged exposure.¹

People with Hansen’s disease have often been ostracized and condemned to a lifetime of social isolation and discrimination. The disease has been used as an excuse to violate human rights⁵ and segregate afflicted people into colonies.⁶ Sorokdo National Hospital in South Korea, formerly a colony for patients with Hansen’s disease, reflects the country’s colonial legacy.

Sorokdo National Hospital is located on Sorokdo, or Sorok Island, just off the southwestern corner of the Korean Peninsula.⁷ The island, measuring around one-and-three-quarter square miles (4.46 km²),⁷ is about 600 meters away from Nokdong-Port.⁸ A bridge connecting the island to the mainland first opened in 2009.⁷ Named for its appearance resembling a small deer,⁹ the island’s long beaches and pine trees form a peaceful landscape,¹⁰ in contrast to its brutal history.

Korea was annexed by Japan in 1910, and Sorokdo National Hospital was first established in 1916 (then known as the Sorokdo Charity Clinic)^8,9 under the leper quarantine policies of the Japanese colonial administration.¹¹ Sorokdo National Hospital has housed a colony of Hansen’s disease residents since then,⁹ and the island infamously served as a concentration camp for these patients during the Japanese occupation of Korea from 1910 to 1945.¹¹ At its peak population, Sorokdo was home to about 6,000 people with Hansen’s disease.^9,11,12

After the forceful segregation and relocation of people to the island,^9,12 many atrocities were committed.^7,9 Patients were subjected to labor exploitation, forced medical experiments, and incarceration.¹² The residents, from children to the elderly,¹⁰ were forced into harsh labor daily to support Japanese war efforts and meet various quota,^11,12 such as harvesting pine resin¹⁰ and collecting oysters.¹¹ Conditions became particularly harsh when Masato Suo became chief administrator of Sorokdo National Hospital.¹⁰ The patients were forced to build a twenty-five-foot column on which his statue was placed, then forced to bow before the statue every morning.¹⁰ Suo was stabbed to death by an inmate in 1942, who was then hanged in a public execution.¹⁰

In addition to labor exploitation, patients were subjected to forced vasectomies, abortions, and amputations as part of medical experiments⁶ and out of fear that the disease was hereditary.^10,11,12 Many of these procedures were performed on a sterilization table inside the autopsy room, which has been designated as Cultural Heritage Site No. 66 since 2004.¹¹ Sutanjang was a line of division on the road that separated the incarcerated from their children. The patients were allowed to see their children once a month from a distance at this line, because of fear of infection.¹⁰

Patients were not allowed to leave the island during their lifetime, based on the quarantine policies of the Japanese colonial administration.¹¹ Even though the island was not far from the mainland, escape was difficult since disfigurement prevented patients from blending in with the rest of the population.⁹ By portraying those with Hansen’s disease as dangerous and defective, the Japanese justified this forced lifetime quarantine to the public.¹³

Sorokdo, along with the rest of Korea, was liberated from the Japanese in 1945.⁹ The new Korean administration kept the quarantine in effect until 1991,⁷ although the anti-leprosy segregation policy was abolished by the South Korean government in 1963.¹² Under the Korean administration, Sorokdo’s roughly 25,000 residents were still left with insufficient resources for an adequate medical facility.⁷ Discrimination and atrocities continued in Sorokdo even under the Korean administration. For example, although a few select patients were allowed to have children, men were not allowed to marry fellow patients unless they first underwent vasectomies.¹⁰ Furthermore, on August 22, 1945, eighty-four patients were killed by armed staff during a conflict between hospital employees and patients.¹²

Today the old hospital building has been replaced by a new, modern structure. The hospital is still in operation, in part dedicated to the care of dementia patients.^11,12 Anyone diagnosed with Hansen’s disease can be admitted to the hospital and may leave after treatment.¹² As of 2019, 496 patients were being treated on Sorokdo,¹⁴ of a total population of 708.¹⁵ The old operating theater has been restored and now serves as a reminder for more than 300,000 tourists each year of the hospital’s brutal history.^9,11 The sign that once warned visitors that they may encounter lepers has been replaced by a stone pillar with the inscription, “Leprosy can be cured.”¹⁰

A bridge connecting Sorokdo to the mainland opened in 2009, which aimed to end the island’s isolation⁷ and helped stir public interest.¹⁰ Investigations into human rights violations and lawsuits against the Korean and Japanese governments arose.^10,12 After the Korean National Assembly passed a law in 2007 to investigate cases of human rights violations and to provide compensation to their victims, the Korean government began providing a monthly compensation of 150,000 won ($140) to the victims in Sorokdo.¹² The Japanese government provided financial compensation to about 100 residents after a law was passed in 2001 that called for such compensation to forcibly-quarantined Hansen’s disease patients in Japan, Korea, and Taiwan.¹⁰ However, Japan stopped its payments in 2003 following a Tokyo court ruling.¹⁰ Sorokdo’s patients are still fighting the case with the Japanese government, and seeking full compensation and a formal apology from the Korean government.¹⁰

While much more is now known about Hansen’s disease, those afflicted still remain vulnerable to discrimination and stigmatization.¹¹ Decades of misunderstanding and distrust between Sorokdo’s inhabitants and mainland Koreans will require much support and time to heal.⁷ Before the opening of the bridge in 2009, patients were not allowed on the ferry, which was the only way of leaving the island, unless they had written permission from a doctor.¹⁰ A mainland motel owner told the Taipei Times: “We used to keep the lepers away. Now I know they are not infectious, but I still feel uneasy about their ugly looks.”⁷ A survey by the Korean government in 2000 revealed that more than fifty percent of Koreans would avoid a public bathhouse or barbershop if it was frequented by those who formerly had Hansen’s disease.¹⁰ The same survey revealed that fifty-five percent would be in support of forced quarantine for those who become newly infected.¹⁰ Interviews with middle-aged Koreans in 2015 and 2018 reflected ongoing hatred of Hansen’s disease patients, with one interviewee stating that he would “throw a stone to the leper once [he found] one.”¹¹

Distrust also extends in the opposite direction. Even after the opening of the bridge, many of Sorokdo’s residents chose to remain isolated from the rest of Korea as they feared they would not be welcome on the mainland.¹⁰ In addition, most of the residents have no connections to families or other acquaintances on the mainland, and despite terrible memories on the island, they are unable to abandon their only home.^7,9

In an effort to help educate the public about Hansen’s disease and reduce stigmatization, the Korean Ministry of Health and Welfare opened up parts of the island to visitors.⁹ Volunteers from the mainland come and spend time caring for those in the hospital or helping out with chores for those living in villages on the island.⁹ Global efforts to educate the public and reduce stigmatization of Hansen’s disease are ongoing, including campaigns to abolish the term “leprosy” because of the historical misconceptions and unpleasant imagery associated with the term.¹⁶

Despite all of the adversity that Sorokdo’s residents have weathered, they treat volunteers with kindness and warmth, a reflection of their resilience. Yong Duk-Kim, a resident who has lost her fingers, lower limbs, and sight to Hansen’s disease, said in an interview with ABC News:

“When I help people I do it happily, I do it joyfully. I look around and I can always see there are people worse off than me. I feel like I have been put here because there are things I can do and always I can help. When I pray to God, I ask him to look well upon me. But, I feel thankful for what I have. . . .”⁹

 

References

1. “Hansen’s Disease (Leprosy).” Centers for Disease Control and Prevention. Last updated February 10, 2017. https://www.cdc.gov/leprosy/index.html
2. Sermrittirong, Silatham., Van Brakel, Wim. “Stigma in Leprosy: Concepts, Causes and Determinants.” Leprosy Review 85, no. 1 (2014):36-47. DOI: 10.47276/Ir.85.1.36.
3. “World Leprosy Day: But the Myths, Learn the Facts.” Centers for Disease Control and Prevention. Last reviewed January 26, 2018. https://www.cdc.gov/features/world-leprosy-day/index.html
4. “History of the national Hansen’s Disease (Leprosy) Program.” Health Resources & Services Administration. Last reviewed July 2018. https://www.hrsa.gov/hansens-disease/history.html#:~:text=The%20STAR%20advocates%20changing%20the,under%20the%20microscope%20in%201873.
5. “Abandoning the Stigma of Leprosy.” Lancet 393, no. 10170 (February 2019):P378. https://doi.org/10.1016/S0140-6736(19)30164-3.
6. Sermrittirong, Silatham., Van Brakel, Wim. “Stigma in Leprosy: Concepts, Causes and Determinants.” Leprosy Review 85, no. 1 (2014):36-47. DOI: 10.47276/Ir.85.1.36.
7. Lewis, Dan. “The Somewhat-willing Inhabitants of Sorok Island.” 2015. http://nowiknow.com/the-somewhat-willing-inhabitants-of-sorok-island/
8. “History.” Sorokdo National Hospital. Accessed February 23, 2019. http://www.sorokdo.go.kr/eng/html/content.do?menu_cd=04_02&depth=hi
9. Sara, Sally. “Isolation, Persecution and Peace: Life in a Korean Leper Colony.” ABC News. 2013. Last updated 2015. https://www.abc.net.au/news/specials/mama-asia/2013-03-28/korea-leper-colony-sorok-island/4751018
10. Jeffreys, Daniel. “Sorok Island: the Last Leper Colony.” Independent. 2011. https://www.independent.co.uk/news/world/asia/sorok-island-last-leper-colony-5334621.html
11. Choung, Eun-hye., Choi, Suh-hee. “Sorokdo as a Combined Dark Tourism Site of Leprosy and Colonized Past.” Asia Pacific Journal of Tourism Research 25, no. 8 (June 2020): 814-828. DOI: 10.1080/10941665.2020.1767666
12. Lee, Han-soo. “Books Shed Light on Former Leper Colony.” Korean Biomedical Review. 2018. https://www.koreabiomed.com/news/articleView.html?idxno=2381
13. Han, S. “The Leprosy and Rumours, Memories of Sorokdo: a Philologic Analysis on the Acknowledgement and Regulation System on Leprosy.” Journal of Local History and Culture 13, no. 1 (2010):441-476. DOI: 10.17068/lhc.2010.05.13.1.441.
14. “2019 nyon hansenbyeong saeop guanlijichim (2019 Hansen’s Disease Policy Management Guideline).” Korea Centers for Disease Control & Prevention. Accessed December 2, 2020. http://www.kdca.go.kr/board.es?mid=a20507020000&bid=0019&act=view&list_no=144373&tag=&nPage=2#
15. “Sorokdo.” Jeollanam-do. Accessed December 2, 2020. http://islands.jeonnam.go.kr/viewer/A_isle/isle/view.aspx?isle_idx=268&MenuType=2
16. Butlin, CR., Lockwood DNJ. “Why We Should Stop Using the Word Leprosy.” Lancet Infectious Diseases 20, no. 8 (Aug 2020):900-901. DOI: 10.1016/S1473-3099(20)30526-0.

 

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LUCY EUM is a 4th-year medical student at Dalhousie University. After immigrating to New Brunswick, Canada, from South Korea in 2005, she became a licensed pharmacist in 2016 and went on to pursue a degree in medicine. In 2012, she spent time volunteering at the Sorokdo National Hospital in South Korea, where she learned about the hardships Hansen’s disease patients face. While assisting with daily care of hospitalized Hansen’s disease sufferers and interacting with them daily, this experience had a significant impact on her as she was embarking on her training as a healthcare professional at 19 years of age.

 

Highlighted in Frontispiece Volume 13, Issue 2– Spring 2021

Fall 2020  |  Sections  |  Hospitals of Note