Leper colony stigma

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There has, historically, been fear around leprosy and people with the disease have suffered stigma, isolation and social exclusion. Expulsion of individuals infected with leprosy to quarantined areas or special institutions has been the general protocol since ancient times and was the recommended course of action by the Leprosy Conference of Berlin 1897. As a result, the exclusion and quarantining of people infected with leprosy became law, hence leprosy colonies were formed. The inhabitants of these colonies had very little legal recourse in preventing their exclusion and, even after they were treated and cured, many had trouble reintegrating into society. [1] Even by the 1960s, when leprosy was highly treatable and curable, it still resulted in repulsion, and the exclusion of sufferers, by the general populace. [1] As leprosy became curable, the focus of study shifted towards investigating the social aspects of the disease. This has become relevant due to the fact that the disease is making a resurgence and is proving resistant to previous remedies.

Contents

Hawaii

Kalaupapa, a small village on molokai island, Hawaii was a legally mandated place of banishment for citizens with leprosy. “It became so after 1865, when the Kingdom of Hawaii passed “An Act to Prevent the Spread of Leprosy” and effectively defined people diagnosed with leprosy as criminals. The State of Hawaii did not repeal the law until 1969.” [2] The historian Carolyn Strange argues that the history of this island with its forced segregation, stigma and death contrasted with its present state as a tourist destination and as a sacred place for Christian pilgrimages which makes this island a symbol for human rights struggles and integration. [2] By recognizing the issues and the rights of those who were cast as criminals for simply being ill with an infectious disease and segregated against their will, it can aid present society with the future handling of people with infectious diseases; a main theme when discussing the stigmas attached to leprosy colonies.[ citation needed ]

The Philippines

In 1904 a leper colony was founded in the Philippines on a remote island called Culion, also known as the Island of Living Dead. Most of these people lived in isolation and engaged in crude agriculture and fishing and most lived in great poverty. As time went on and medical advancements were made towards the curing of leprosy, the island welcomed people with non-leprosy as settlers, many of whom were the relatives and friends of the pre-existing patients. [3] As the disease became less of a threat and cures and treatments became available, the stigma behind the disease began to lessen and the quality of life for those on the island improved. “Biomedical research facilities have been built there which provide no-fee medical consultation, diagnostic and treatment services to patients with leprosy and other skin diseases.” [3] As the fear aspect of the disease lessened the community became more accepting in the Philippines and the same efforts to distort history as in Hawaii are not existent as the Cullion Leper Colony still exists today and helps house and treat the current population with skin disorders.[ citation needed ]

China

In China, various causes contributed to the long-term existence and spread of leprosy. In the past, people frequently lived in poverty under poor health conditions with overcrowding and poor nutrition. [4] As in other countries with a history of a leprosy endemic, these factors are consistent in China as they are with other nations. Most leprosy colonies were located in isolated places with poor transportation routes and with housing that was on the verge of collapse. The leprosy colonies had a shortage of medical materials and the health of these people was greatly neglected. [5] This was a result of the stigma that those infected received from the general public and holds true to form of other similar colonies throughout the world. Chinese experts now recommend that the small and isolated leprosy colonies should be closed and that newer more modern centres should be established that are more integrated within society. The newly established centres should act as place for reference, training and research on the disease. [6] As in other countries once the disease became treatable much of the stigma was removed from the sufferers of the disease and an effort to increase of the lifespan and end the isolation of these people became a mandate.

Brazil

In Brazil the isolation of people with leprosy was compulsory by law from the years 1920-1962 but in reality operated in this fashion until the 1980s. [7] This, was largely based on the stigmas associated with the disease. Data were collected and were further analyzed, utilizing the Stigma reference. The results indicated that after entry in the institution, these patients got their broken family bonds, the citizens lost their rights, regarding the situation, they took upon a new life, in the new environment. [8] These patients had difficulty receiving proper care due to the nature of their disease during the time periods these colonies operated. “Leprosy, fraught with prejudice and stigma in the early 20s was treated for decades with stringent policies of compulsory isolation of patients in hospitals colonies. Because of prejudice, there was difficulty in hiring staff to maintain these establishments.” [5] The misinformation and the inability to treat the disease was the cause of this stigma towards those infected. “It was found that leprosy causes a great impact on the everyday lives of these people through the stigma and prejudice related to lack of knowledge about the transmission, control and cure of the disease and the ancient history it carries.” [1]

Leprosy today

Leprosy has existed in the world since ancient times and continues to exist in the world today, despite being largely curable and treatable. The stigmas associated with the disease have impacted on those suffering from leprosy in a highly negative way that up until recently was socially accepted. “The influence of the Christian Church was such that the ritualised banning of lepers became incorporated into the treatment of elephantiasis -- against the advice of physicians like Caelius Aurelianus (4th/5th century AD)". Gradually the name lepra (leprosy) replaced elephantiasis, which ensured the stigmatisation of leprosy as an "unclean disease" with divine punishment for previous sins—a tragic misconception which persisted up to modern times. [9] The disease was seen as unclean, highly contagious and left people horrifically scarred from its effects, this allowed for the sufferers to become easily stigmatized against. From researching various leper colonies from around the world the disease has been most prevalent in those who live in poor areas, with poor sanitation and drinking water. The disease also became connected to being poor, which goes hand in hand with the idea that it was a result of being unclean. This stigmatizing of people due to misconceptions of how the disease is transmitted and prejudices against the people who more commonly contract the disease can be seen in other diseases today such as AIDS and SARS with homophobia and racism as stigmas attached to these diseases. In a comparative study between AIDS and leprosy there was determined to still be stigmas attached to each, with AIDS receiving a more constant form of stigmatization but with leprosy receiving the more harsh form due to the visual aspects of the disease and the isolation and seclusion associated with those who have it. [10] The study of social stigma attached to disease is still a relevant topic and as the authors referenced in this article have concluded that as time passes and understanding of the disease scientifically is gained and cures and treatments become available, the stigma associated with the disease lessens. When people understand something they cease to fear it and become more accepting. That is not to say, however, that there are not still those who hold prejudice and discriminate against those who do have contagious diseases and use it as a forum of class warfare and racism.[ citation needed ]

Related Research Articles

<span class="mw-page-title-main">Leprosy</span> Chronic infection caused by mycobacteria leprae or lepromatosis

Leprosy, also known as Hansen's disease (HD), is a long-term infection by the bacteria Mycobacterium leprae or Mycobacterium lepromatosis. Infection can lead to damage of the nerves, respiratory tract, skin, and eyes. This nerve damage may result in a lack of ability to feel pain, which can lead to the loss of parts of a person's extremities from repeated injuries or infection through unnoticed wounds. An infected person may also experience muscle weakness and poor eyesight. Leprosy symptoms may begin within one year, but, for some people, symptoms may take 20 years or more to occur.

<span class="mw-page-title-main">Father Damien</span> Belgian Roman Catholic priest and saint (1840–1889)

Father Damien or Saint Damien of Molokai or Saint Damien De Veuster, born Jozef De Veuster, was a Roman Catholic priest from Belgium and member of the Congregation of the Sacred Hearts of Jesus and Mary, a missionary religious institute. He was recognized for his ministry, which he led from 1873 until his death in 1889, in the Kingdom of Hawaiʻi to people with leprosy, who lived in government-mandated medical quarantine in a settlement on the Kalaupapa Peninsula of Molokaʻi.

<span class="mw-page-title-main">Molokai</span> Island of the Hawaiian Islands archipelago

Molokai is the fifth most populated of the eight major islands that make up the Hawaiian Islands archipelago in the middle of the Pacific Ocean. It is 38 by 10 miles at its greatest length and width with a usable land area of 260 sq mi (673.40 km2), making it the fifth-largest in size of the main Hawaiian Islands and the 27th largest island in the United States. It lies southeast of Oʻahu across the 25 mi (40 km) wide Kaʻiwi Channel and north of Lānaʻi, separated from it by the Kalohi Channel.

<span class="mw-page-title-main">Leper colony</span> Place to isolate people with leprosy

A leper colony, also known by many other names, is an isolated community for the quarantining and treatment of lepers, people suffering from leprosy.
M. leprae, the bacterium responsible for leprosy, is believed to have spread from East Africa through the Middle East, Europe, and Asia by the 5th century before reaching the rest of the world more recently. Historically, leprosy was believed to be extremely contagious and divinely ordained, leading to enormous stigma against its sufferers. Other severe skin diseases were frequently conflated with leprosy and all such sufferers were kept away from the general public, although some religious orders provided medical care and treatment. Recent research has shown M. leprae has maintained a similarly virulent genome over at least the last thousand years, leaving it unclear which precise factors led to leprosy's near elimination in Europe by 1700. A growing number of cases following the first wave of European colonization, however, led to increased attention towards leprosy during the New Imperialism of the late 19th century. Following G.A. Hansen's discovery of the role of M. leprae in the disease, the First International Leprosy Conference held in Berlin in 1897 renewed interest and investment in the isolation of lepers throughout the European colonial empires.

Lepra (Leprosy Relief Association) is a UK-based international charity established in 1924, working to diagnose, treat, and rehabilitate people with leprosy. Lepra currently works in India, Bangladesh, and Zimbabwe.

<span class="mw-page-title-main">Kalaupapa, Hawaii</span> Unincorporated community in the state of Hawaii, United States

Kalaupapa is a small unincorporated community and Hawaiian home land on the island of Molokaʻi, within Kalawao County in the U.S. state of Hawaii. In 1866, during the reign of Kamehameha V, the Hawaii legislature passed a law that resulted in the designation of Molokaʻi as the site for a leper colony, where patients who were seriously affected by leprosy could be quarantined, to prevent them from infecting others. At the time, the disease was little understood: it was believed to be highly contagious and was incurable until the advent of antibiotics. The communities where people with leprosy lived were under the administration of the Board of Health, which appointed superintendents on the island.

<span class="mw-page-title-main">Kalaupapa National Historical Park</span> National Historical Park of the United States

Kalaupapa National Historical Park is a United States National Historical Park located in Kalaupapa, Hawaiʻi, on the island of Molokaʻi. Coterminous with the boundaries of Kalawao County and primarily on Kalaupapa peninsula, it was established by Congress in 1980 to expand upon the earlier National Historic Landmark site of the Kalaupapa Leper Settlement. It is administered by the National Park Service. Its goal is to preserve the cultural and physical settings of the two leper colonies on the island of Molokaʻi, which operated from 1866 to 1969 and had a total of 8500 residents over the decades.

<span class="mw-page-title-main">Peel Island (Queensland)</span> Suburb of Moreton Bay, Queensland, Australia

Peel Island is a small heritage-listed island located in Moreton Bay, east of Brisbane, in South East Queensland, Australia. The island is a locality within the local government area of Redland City and a national park named Teerk Roo Ra National Park and Conservation Park.

Leprosy was said to be first recognized in the ancient civilizations of China, Egypt, and India, according to the World Health Organization (WHO). Leprosy, also known as Hansen's disease, was officially eliminated at the national level in China by 1982, meaning prevalence is lower than 1 in 100,000. There are 3,510 active cases today. Though leprosy has been brought under control in general, the situation in some areas is worsening, according to China's Ministry of Health. In the past, leprosy sufferers were ostracized by their communities as the disease was incurable, disfiguring, and wrongly thought to be highly infectious.

Leprosy stigma is a type of social stigma, a strong negative feeling towards a person with leprosy relating to their moral status in society. It is also referred to as leprosy-related stigma, leprostigma, and stigma of leprosy. Since ancient times, leprosy instilled the practice of fear and avoidance in many societies because of the associated physical disfigurement and lack of understanding behind its cause. Because of the historical trauma the word "leprosy" invokes, the disease is now referred to as Hansen's disease, named after Gerhard Armauer Hansen who discovered Mycobacterium leprae, the bacterial agent that causes Hansen's disease. Those who have suffered from Hansen's disease describe the impact of social stigma as far worse than the physical manifestations despite it being only mildly contagious and pharmacologically curable. This sentiment is echoed by Weis and Ramakrishna, who noted that "the impact of the meaning of the disease may be a greater source of suffering than symptoms of the disease".

As of 2009, 2,600 former leprosy patients were living in 13 national sanatoriums and 2 private hospitals in Japan. Their mean age is 80. There were no newly diagnosed Japanese leprosy patients in 2005, but one in 2006, and one in 2007.

<span class="mw-page-title-main">The Leprosy Mission</span>

The Leprosy Mission is a Christian international NGO. They are the largest and oldest organisation working in the fight against leprosy and are working towards the goal of zero leprosy transmission by 2035.

Leper colony money was special money which circulated only in leper colonies due to the fear that money could carry leprosy and infect other people. However, leprosy is not easily transmitted by casual contact or objects; actual transmission only happens through long-term, constant, intimate contact with leprosy sufferers and not through contact with everyday objects used by sufferers.

Leprosy currently affects approximately a quarter of a million people throughout the world, with the majority of these cases being reported from India.

<span class="mw-page-title-main">Epidemiology of leprosy</span>

Worldwide, two to three million people are estimated to be permanently disabled because of leprosy. India has the greatest number of cases, with Brazil second and Indonesia third.

The Culion leper colony is a former leprosarium located on Culion, an island in the Palawan province of the Philippines. It was established by the U.S. government in order to rid leprosy from the Philippine Islands through the only method known at the time: isolating all existing cases and gradually phasing out the disease from the population. In addition to segregating the disease from the rest of the population, the island was later established in order to offer a better opportunity for people afflicted with leprosy to receive adequate care and modern treatments.

<span class="mw-page-title-main">MORHAN</span>

MORHAN or Movement of Reintegration of Persons Afflicted by Hansen's disease in English, is a non-profit organization that operates to reduce leprosy and the stigma of leprosy in Brazil. This organization was initially created to ensure the rights of patients from leper colonies due to their isolation, and today it is one of the most successful Brazilian social movements, with representation in the National Health Council. The group has used several methods to disseminate information about leprosy including, but not limited to, handing out pamphlets, hosting seminars, and organizing puppet shows for children. Morhan also creates its own publications as a means of mobilization and news regarding leprosy. Furthermore, Morhan has worked with anthropologists to provide explanatory models and lay explanations of leprosy within the Brazilian context. Morhan's work has been exemplary in creating partnerships between social groups and the government and received an award from the United Nation’s Millennium Development Goals. The current National Coordinator is Artur Custodio Moreira de Souza.

<span class="mw-page-title-main">History of leprosy</span>

The history of leprosy was traced to its origins by an international team of 22 geneticists using comparative genomics of the worldwide distribution of Mycobacterium leprae. Monot et al. (2005) determined that leprosy originated in East Africa or the Near East and traveled with humans along their migration routes, including those of trade in goods and slaves. The four strains of M. leprae are based in specific geographic regions where each predominantly occurs:

<span class="mw-page-title-main">Ambrose K. Hutchison</span> Hawaiian resident leader of the leper settlement of Kalaupapa

Ambrose Kanoealiʻi or Ambrose Kanewaliʻi Hutchison was a long-time Native Hawaiian resident of the Kalaupapa Leprosy Settlement on the island of Molokaʻi who resided there for fifty-three years from 1879 to his death in 1932. During his residence, he assumed a prominent leadership role in the patient community and served as luna or resident superintendent of Kalaupapa from 1884 to 1897.

Colonial epidemic disease in Hawaii has greatly threatened the Native Hawaiian population since its introduction to the islands over a hundred years ago. Beginning with the first colonizers led by Captain James Cook that arrived in the islands in 1778, all the way up until today, foreign disease has been present in Native Hawaiians. As Hawaii was so secluded and contained a population of only the Hawaiian people, the islands were considered a "virgin population." This meant that once foreigners arrived, the Native Hawaiian population was decimated by these illnesses while Europeans remained healthy. Some of these diseases included gonorrhea, syphilis, influenza, cholera, tuberculosis, the mumps, measles, smallpox, and leprosy. While each disease brought a different outcome, they all contributed to the reduction of the Native Hawaiian population as they collectively caused more than 100,000 deaths.

References

  1. 1 2 3 FELDMEIER, HERMANN; et al. (March 2010). "Perceived social restriction in leprosy-affected inhabitants of a former leprosy colony in Northeast Brazil". Leprosy Review. 81 (1). Academic Search Elite: 69–78. doi: 10.47276/LR.81.1.69 . PMID   20496571. S2CID   17025094.
  2. 1 2 Strange, Carolyn (Summer 2004). "Symbiotic Commemoration: The Stories of Kalaupapa". History & Memory. 16 (1). Indiana University Press: 86–117. doi:10.1353/ham.2004.0006.
  3. 1 2 Handog, Evangeline B., Ma. Teresita G. Gabriel, and Cheryl C. Co. "Leprosy in the Philippines: a review." International Journal of Dermatology 50, no. 5 (May 2011): 573-581
  4. ↑ Xiang-Sheng, Chen, Li Wen-Zhong, Jiang Cheng, and Ye Gan-Yun. 2001. "Leprosy in China: epidemiological trends between 1949 and 1998." Bulletin Of The World Health Organization 79, no. 4: 306.
  5. 1 2 Jianping, Shen, Liu Musang, and Zhou Min. "Current situation of leprosy colonies/leprosaria and their future in P.R. China." Leprosy Review 78, no. 3 (September 2007): 281-289
  6. ↑ Gusmão, APB, and MJM Antunes. "To be with leprosy and to work as a nurse: histories of fight and overcoming [sic] [Portuguese]." Revista Brasileira De Enfermagem 62, no. 6 (November 2009): 820-824.
  7. ↑ Patricia, Teixeira Celestino, et al. "Hansen's disease: stigma and prejudice faced by inmates of Casa de Acolhida Souza Araujo in the city of Rio Branco [Portuguese]." Revista Nursing 14, no. 166 (March 2012): 164-170.
  8. ↑ RETIEF, FRANÇOIS, and LOUISE CILLIERS. "Die ontstaan en ontwikkeling van melaatsheid in die antieke tyd. (Afrikaans)." Suid-Afrikaanse Tydskrif Vir Natuurwetenskap En Tegnologie 28, no. 1 (March 2009): 1-12
  9. ↑ DL Ribas, et al. "Leprosy: stigma and prejudice lived by institucionalized [sic] patients in Santa Catarina State, Brazil (1940-1960) [Portuguese]." Revista Brasileira De Enfermagem 61, (November 2, 2008): 708-712.
  10. ↑ Stevelink, S., A.M., H., and V. Augustine. "Stigma and social participation in Southern India: Differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS." Psychology, Health & Medicine 16, no. 6 (December 2011): 695-707.
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