Leprosy stigma is a kind of social stigma, a strong feeling that a leprosy patient is shameful and is not accepted normally in society. It is also called leprosy-related stigma, leprostigma, and stigma of leprosy. From ancient times the disease was feared because of the disfigurement it caused and lack of understanding about how it was transmitted; it was long believed to be inherited and was associated with ideas of "unclean blood". The stigma was renewed in the late nineteenth century as Europeans encountered cultures where leprosy was or became more widespread than in their own, or where it was associated with poverty and developing economies. An example was in Hawaiʻi, where European Americans, particularly sugar planters, supported legislation to quarantine persons with leprosy in the belief that this would prevent its transmission.
United States sociologist Erving Goffman defined "stigma" as an attribute that is deeply discrediting; a stigmatized individual is one who is not accepted and not accorded the respect and regard of his peers, who is disqualified from full social acceptance. It is associated with 1) physical deformities; 2) blemishes of character, such as are associated with alcoholism and drug addition; or 3) race, nation, social class, sexuality and religion that are thought of as second-class by another group.
In a paper entitled "Leprosy stigma", William Jopling cited the definition of stigma by Erving Goffman. He wrote that there are three types of stigmatized individuals associated with the one disease of leprosy: 1) Physical deformities, such as facial plaques, facial palsy, claw hand deformity or footdrop; 2) blemished character, as in persons confined to a leprosarium; and 3) tribal stigma, or people belonging to a poor social class.
History of leprosy stigma
Leprosy stigma has been associated with the disease for most of its history. In Western Europe it reached its peak in the Middle Ages, at a time when the Church considered leprosy as "unclean." Many "lazar houses" were built. Patients had to carry bells to signal their presence but also to attract charitable gifts.
The finding in 1873 by Hansen that leprosy was infectious and transmitted by a bacterium worsened leprosy stigma. It was long associated with sexually transmitted diseases and during the nineteenth century was thought to be a stage of syphilis.<ref name="Blessed Damien of Molokai", The stigma of the disease was renewed among Europeans in the imperial era when they found it was "hyperepidemic in regions that were being colonized." It became associated with poor, developing countries, whose residents were believed by Europeans to be inferior in most ways.
In Japan, the government required segregation of persons with leprosy, a separation that increased the social stigma against them. Leprosy stigma has been universal, and has been present in all areas of the world where leprosy was present. Since the late twentieth century, with efforts by the World Health Organization to control the disease through distribution of free medication, many international organisations have been working to end the stigma attached to leprosy. They work to educate people and raise awareness of the facts about leprosy, in particular that it is only mildly contagious; some 95% of people are immune to the bacterium that causes it.
Instances of leprosy stigma
Numerous societies in the Middle Ages and nineteenth and twentieth centuries required separation of persons with leprosy from the general population.
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.
In the Japanese drama film Sweet Bean (Japanese: あん Hepburn: An?) 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.
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.
Southern Europe and Russia
There was considerable "leprosy stigma".
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.
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.
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. Admission was on voluntary basis. 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.
Factors contributing to leprosy stigma
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.
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.
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. 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.
Campaigns against leprosy stigma
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.
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. The back cover still includes facts about Hansen's Disease.
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.
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, whilst TLM Scotland launched "Delete the L Word," in 2012.
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.
- Erving Goffman: Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs. Prentice-Hall Inc., 1963
- William Jopling. "Leprosy stigma," in Leprosy Review (1991), Vol. 62, 1-12.
- Hyakunen no seisou (100 years of Kikuchi Keifuen Sanatorium), 2009 (Japanese)
- The STAR Newsletter via the Louisiana Digital Library. http://www.louisianadigitallibrary.org/cdm4/index_p15140coll52.php?CISOROOT=/p15140coll52 Retrieved 6 February 2012
- 40 & 8 La Societe des Quarante Hommes et Huit Chevaux. http://www.fortyandeight.org/the-star/ Retrieved 6 February 2012.
- "Facts about Hansen's Disease." The Star (July–December 2011) 63(12): 16. http://www.fortyandeight.org/storage/The%20Star%20July-December%202011%2012-20-2011.pdf Retrieved 6 February 2012.
- The National Hansen's Disease Museum. http://www.hrsa.gov/hansensdisease/museum/index.html Retrieved 6 February 2012.
- Infolep Leprosy Information Services gives a subject guide on leprosy related stigma.
- Urgent need to end stigma and isolation
- "Medicine: Lifting the stigma of leprosy", TIME