Leprosy stigma

Japan

In Japan, the government required segregation of persons with leprosy, a separation that increased the social stigma against them. In medieval times, leprosy patients lived apart, settling around temples or shrines, where they begged for charity from passers-by. Starting in 1909, the government required leprosy patients to be hospitalized in the leprosy sanatoria, believing this would prevent transmission of the disease. In some cases, patients were forcibly taken to the sanatoria and their houses were disinfected in the presence of neighbors. Their families were also affected by leprosy stigma. Some patients attempted suicide. The law lasted until 1996.

• In Kumamoto, Japan, a patient with leprosy named Matsuo Fujimoto was tried on charges of an explosion in 1951 and murder in 1952. During the questioning and trial procedures, he was discriminated against as a leprosy patient. He was convicted and executed in 1962.

• Kumamoto Prefecture Governor Yoshiko Shiotani reported in 2003 that a hotel rejected reservations of ex-patients of Kikuchi Keifuen Sanatorium who were on the Prefecture's home visit program. Many people protested against the hotel. When the patients rejected the apology of the hotel, there were violent protests against the patients. The hotel tore down this building in June 2004.^[8]

In the Japanese drama film Sweet Bean directed by Naomi Kawase (2015) the issue of leprosy stigma affecting the character of Tokue turns out to be the main subject of the story and leads to a brief description of an existing community of ex-patients.

Scandinavia

In Jopling's original report, he quoted Hansen as saying "the Norwegian state has always handled its leprosy victims humanely". Hospitalized patients were free to go out during the day to sell their handwork in the market, and were allowed to have visitors. There was little evidence of stigma. Many patients immigrated to the United States, but that was because of seeking to escape poverty.

India

The concept of heredity was deeply rooted, and when leprosy was thought to be inherited, persons with the disease (and their children) were shunned. As deformity was considered divine punishment, stigma was associated with it.^[9]

China

Leprosy stigma has been considerable, though it has declined since the late twentieth century. Its resulting facial disfigurement and mutilation of limbs was feared. The disease's long incubation period resulted in mystery for centuries about its origins, inspiring horror, fear and disgust.

United States

In 1866 the Hawaiian legislature passed a law requiring quarantine of persons with leprosy. Those with severe cases were sent to Kalawao, an isolated settlement on the island of Molokaʻi. Later a second and larger settlement was developed at Kalaupapa. This settlement had a peak population of about 1100 shortly after the turn of the twentieth century; in total about 8500 persons were quarantined here over the decades until 1965. Both settlements are in Kalawao County. After quarantine ended, those persons living at Kalaupapa who chose to do so could remain for the rest of their lives. The entire county is now within what is known as the Kalaupapa Leprosy Settlement and National Historical Park, which preserves both the major structures of the settlements and the associated environment of the area.

In 1884, the Louisiana legislature established a State Board of Leprosy Control, as there were numerous cases in the state. The strain here was associated with the history of the slave trade from West Africa.

In 1917 the US Congress passed a bill to create a national leprosarium, which was built in Carville, Louisiana and run by the Public Health Service, today known as the National Hansen's Disease Museum. In 1941, patient Stanley Stein founded a journal, The Star, to combat leprosy stigma. Researchers in the 1940s at the U.S. National Leprosarium proved the clinical effectiveness of the intravenous sulfone, Promin, the first widely effective treatment for the disease. It was used both to cure leprosy and mitigate the damage it caused. In the late twentieth century, researchers developed multidrug therapy (MDT) to offset antibiotic resistance developing in the disease bacterium.

Patients' relatives and leprosarium workers

Because of associated ideas about heredity and contagion, children and families of persons with leprosy also suffered stigma. Studies found that only about 5% of spouses living with persons with the disease contracted it, making it clear that leprosy was not highly contagious.

General public's misconceptions

The general public still has misconceptions about leprosy, with persistent beliefs that it is highly contagious. In the twenty-first century, agencies such as The Leprosy Mission campaign to end these misconceptions and work to educate people about leprosy, its causes, and how it is transmitted. They want people with the disease to be identified so they can be treated and limit the physical damage, as well as control contagion. In the twenty-first century, effective, free treatment is available through WHO. In many parts of the world, lay people still believe the disease to be incurable. The multi-drug therapy provided free to countries where the disease is endemic provides a reliable cure for leprosy.^[10]

Leprosaria

Lazar hospitals, leprosaria, and colonies were built to quarantine persons with leprosy and associated with its stigma. Some of the leprosaria and colonies are situated in remote lands or islands.

The press

In the past, the press contributed to leprosy stigma, reflecting social values in many areas.

In 2012, leprosy support organisations successfully lobbied Aardman Animations to have a scene from The Pirates! In an Adventure with Scientists, removed due to concerns about the image it portrayed.^[11] The scene involved a "leper ship", and a leprosy sufferer whose arm falls off during the scene. As there are already many myths surrounding leprosy, advocates working to end stigma believed that this scene was unhelpful. Aardman agreed to remove it. Some argued that the joke was harmless and should have been retained.^[12]

The Star

Stanley Stein, a blind patient at the national leprosarium at Carville, started The Star, a crusading international magazine against leprosy stigma. The journal raised awareness of facts about Hansen's Disease. The full text of the STAR Newsletter, 1941 - 2001 is available online.^[13]

The Star continues to be published twice a year. New copies are published on the 40 & 8 La Societe des Quarante Hommes et Huit Chevaux website.^[14] The back cover still includes facts about Hansen's Disease.^[15]

The United Nations

In June 2015, the UN Human Rights Council adopted a resolution on the elimination of discrimination against persons affected by leprosy and their family members.^[16] The Human Rights Council voted to establish the mandate of a Special Rapporteur on the issue in June 2017 for a period of three years. Subsequently in November 2017 Ms. Alice Cruz of Portugal was appointed as the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.^[17] On 16 August 2018, Ms. Alice Cruz issued a statement saying that, “The use of leprosy as a pejorative metaphor derives from long-lasting stigmatising connotations produced by different cultural traditions, social rules and legal frameworks,.. Using it as a metaphor leads to wrongful stereotyping that fuels public stigma, everyday discrimination, and impairs the enjoyment of human rights and fundamental freedoms by persons affected and their families,”^[18] Examples of politicians who made reference to leprosy while referring to opposition parties, the statement stresses are the Portuguese Prime Minister, António Costa, and the Bangladeshi Shipping Minister, Shajahan Khan.

Museums

National Hansen's Disease Museum (Japan) in Tokyo, Japan is a representative museum showing the history of leprosy in Japan, for the eradication of leprosy stigma. It is situated next to the Tama Zenshoen Sanatorium. Smaller museums are associated with other sanatoriums in Japan, such as in Tohoku Shinseien Sanatorium, Kuryu Rakusen-en Sanatorium, Nagashima Aiseien Sanatorium and Kikuchi Keifuen Sanatorium.

The National Hansen's Disease Museum in Carville, Louisiana collects, preserves and interprets the medical and cultural artifacts of the Carville Historic District. It promotes the understanding, identification and treatment of Hansen's Disease (leprosy) by creating and maintaining museum displays, traveling exhibits, publications and a Web site in order to educate and inform the public.^[19]

Delete the L Word/ Don't Call Me a Leper

The Leprosy Mission international advocates for the end of the use of the term "leper" to describe a person with leprosy. The term has negative connotations for sufferers and, because of many historical references, has long been used to identify someone as "unclean" in a ritual sense, or who should not be touched or associated with. TLM England and Wales launched their "Don't Call Me A Leper" campaign in 2010,^[20] whilst TLM Scotland launched "Delete the L Word," in 2012.^[21]

Both organisations have noted that the word "leper, is derogatory, ostracizing and outdated." They advocate for the use of the term "people/person with leprosy." For those undergoing treatment, "leprosy patient" would also be acceptable. TLM have regularly contacted the press to discourage the use of the word "leper", and have successfully lobbied the BBC to have it added to guidance for words which should not be used.^[20]