Leprosy stigma
Encyclopedia
Leprosy stigma is a kind of social stigma
, a strong feeling that a leprosy
patient is shameful and is not accepted normally in society. Also called leprosy related stigma, leprostigma and stigma of leprosy.
made a definition that stigma is 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 caused by 1) the physical deformities, 2) blemishes of character such as alcoholism 3) by race, nation, social class, sexuality and religion.
cited the definition of stigma by Erving Goffman
and wrote that there are three types of stigmatized individuals in one disease, leprosy. 1) Physical deformities such as facial plaques especially in reaction, facial palsy, claw hand deformity or footdrop 2) blemish character in a leprosarium 3) tribal stigma or people belonging to a poor social class.
Case 1. A 27-year-old male Indian with leprosy and kidney trouble could not receive proper treatment, though he was given a kidney transplant.
Case 2. A 60-year-old man with leprosy developed ulcerations of his stump because of the ignorance of his doctor.
Case 3. The wife of a patient with leprosy, because of strong fear of her family, became a recluse and died prematurely.
Case 4. A 17-year-old man with borderline leprosy joined the British Army in spite of his dilemma.
Seven years later his secret was revealed and he was discharged.
Case 5. A young Indian with tuberculoid leprosy improved, and one year later he admitted that he would have committed suicide had the diagnosis been made in his country.
Case 6. A Maltese man attempted to commit suicide unsuccessfully.
Case 7. Of three suicide attempts, one was successful. He left a note saying that he could not face life with leprosy.
simple but appropriate explanation of leprosy.
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
. There are smaller museums in other sanatoriums in Japan, such as in Tohoku Shinseien Sanatorium
, Kuryu Rakusen-en Sanatorium
, Nagashima Aiseien Sanatorium
and Kikuchi Keifuen Sanatorium
.
Social stigma
Social stigma is the severe disapproval of or discontent with a person on the grounds of characteristics that distinguish them from other members of a society.Almost all stigma is based on a person differing from social or cultural norms...
, a strong feeling that a leprosy
Leprosy
Leprosy or Hansen's disease is a chronic disease caused by the bacteria Mycobacterium leprae and Mycobacterium lepromatosis. Named after physician Gerhard Armauer Hansen, leprosy is primarily a granulomatous disease of the peripheral nerves and mucosa of the upper respiratory tract; skin lesions...
patient is shameful and is not accepted normally in society. Also called leprosy related stigma, leprostigma and stigma of leprosy.
Stigma
Erving GoffmanErving Goffman
Erving Goffman was a Canadian-born sociologist and writer.The 73rd president of American Sociological Association, Goffman's greatest contribution to social theory is his study of symbolic interaction in the form of dramaturgical perspective that began with his 1959 book The Presentation of Self...
made a definition that stigma is 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 caused by 1) the physical deformities, 2) blemishes of character such as alcoholism 3) by race, nation, social class, sexuality and religion.
Leprosy stigma
In a paper entitled leprosy stigma, William JoplingWilliam Jopling
William Jopling was a leprologist who together with Ridley D.S. proposed the Ridley-Jopling classification of leprosy , and wrote the widely read textbook of "Handbook of Leprosy" which had a fifth edition...
cited the definition of stigma by Erving Goffman
Erving Goffman
Erving Goffman was a Canadian-born sociologist and writer.The 73rd president of American Sociological Association, Goffman's greatest contribution to social theory is his study of symbolic interaction in the form of dramaturgical perspective that began with his 1959 book The Presentation of Self...
and wrote that there are three types of stigmatized individuals in one disease, leprosy. 1) Physical deformities such as facial plaques especially in reaction, facial palsy, claw hand deformity or footdrop 2) blemish character in a leprosarium 3) tribal stigma or people belonging to a poor social class.
History of leprosy stigma
- The history of leprosy stigma is as old as the history of leprosy. In Western Europe it reached its peak in the Middle Ages since the Church considered leprosy as "unclean", and many "lazar houses" were built. Patients had carried bells to signal their presence.
- Since leprosy was found infectious, another kind of cause worsened leprosy stigma. In Japan, forced segregation strengthened leprosy stigma. Leprosy stigma has been universal, and has been present in all parts where leprosy was present.
Cases written by Jopling
Jopling's hospital was in England, and patients were mostly foreigners who came from other countries after the war.Case 1. A 27-year-old male Indian with leprosy and kidney trouble could not receive proper treatment, though he was given a kidney transplant.
Case 2. A 60-year-old man with leprosy developed ulcerations of his stump because of the ignorance of his doctor.
Case 3. The wife of a patient with leprosy, because of strong fear of her family, became a recluse and died prematurely.
Case 4. A 17-year-old man with borderline leprosy joined the British Army in spite of his dilemma.
Seven years later his secret was revealed and he was discharged.
Case 5. A young Indian with tuberculoid leprosy improved, and one year later he admitted that he would have committed suicide had the diagnosis been made in his country.
Case 6. A Maltese man attempted to commit suicide unsuccessfully.
Case 7. Of three suicide attempts, one was successful. He left a note saying that he could not face life with leprosy.
Cases in Japan
- In medieval times, leprosy patients lived apart from healthy people around temples or shrines and they begged mercy to passers-by. Starting in 1909, leprosy patients were hospitalized in the leprosy sanatoria, by the leprosy prevention law. In later years, they were forcibly taken to the sanatoria and their houses were disinfected in the presence of neighbors, and the families were also affected by leprosy stigma. This is called forced segregation. Some of them attempted suicide. The law lasted until 1996.
- In Kumamoto, Japan, there was a case of explosion and murder in 1951, and the accused was a patient named Matsuo FujimotoMatsuo Fujimotowas a Japanese executed man, who was charged for a 1952 murder and was executed by hanging in 1962. His guilty verdict, death sentence and execution, made controversies, because he suffered from leprosy and the Japanese government were urging the discrimination and prejudice against the leper...
with leprosy. During the questioning and trial procedures, he received discrimination because he was a leprosy patient. He was executed in 1961.
Exceptional cases in Scandinavia
- In the Jopling's original report, he quoted Hansen as saying "the Norwegian state has always handled its leprosy victims humanely". Hospitalized in-patients were free by day to sell their handwork in the market, or to entertain visitors. Hence there was little evidence of stigma. Many patients went to America, not from stigma, but from poverty.
India
- The concept of heredity was deeply rooted and they considered deformity as divine punishment and there was considerable leprosy stigma; even doctors shared it.
China
- Leprosy stigma has been considerable, though it has declined recently. Facial disfigurement, mutilation of limbs, chronicity and long incubation period caused mystery about its origins, inspiring horror, fear and disgust.
America
- In 1884, the Louisiana legislature established a State Board of Leprosy Control, and in 1917 the US Congress passed a bill to create a national leprosarium. The admission was on voluntary basis. In 1941, Stanley Stein published a journal The Star to combat leprosy stigma with the weapon of newly discovered Promin.
Patients' relatives and leprosarium workers
- Jopling's children who lived in the Jordan Hospital with Jopling could not receive their friends because their parents did not allow them to visit Jopling's children. 3 years later, their friends could visit the Jopling's children.
- Children born of parents in Kumamoto, Japan, could not attend primary school; many inhabitants went on strike.
- Doctors, nurses and workers working in leprosaria have been affected by leprosy stigma of lesser degrees in the past.
Reservations were rejected by a hotel because of leprosy stigma
- Kumamoto Prefecture Governor Yoshiko Shiotani made it public that a hotel rejected reservations of ex-patients of Kikuchi Keifuen Sanatorium on the Prefecture's home visit program based on leprosy stigma on Nov. 18, 2003. Many people protested against the hotel. When the patients rejected the external apology of the hotel, there were many violent protests against the patients. The hotel tore down the hotel building in June 2004.
- This incidence indicated that there were still people with leprosy stigma, as well as people without it.
General public's misconceptions
The general public has misconceptions about leprosy, particularly regarding the degree of its contagiousness, and a campaign should be carried out to enhance public knowledge of leprosy's curability.Leprosaria
The presence of lazar hospitals, leprosaria, colonies is the reflection of leprosy stigma. Some of the leprosaria and colonies are situated in remote lands or islands.Prospects for further studies
Wim H. van Brakel, head of the Leprosy Unit at the Royal Tropical Institute, wrote in "Analyzing Stigma" that stigma has three components; perceived stigma(or felt) stigma, enacted stigma(or discrimination) and internalized (or self) stigma. He further wrote that leprosy is one of the oldest stigmatized conditions known, and suggested that further studies be made.The Star
Stanley Stein, a blind patient, started The Star, a crusading international magazine against leprosy stigma, at Carville; this journal had accomplished great achievements and ended in 2001 after 60 years. On the back page there was asimple but appropriate explanation of leprosy.
Museums
National Hansen's Disease Museum (Japan)National Hansen's Disease Museum (Japan)
The ' is a museum in Higashimurayama, Tokyo, Japan that is dedicated to education about Hansen's disease and to eliminate discriminatory practices against its sufferers...
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
Tama Zenshoen Sanatorium
Tama Zenshoen Sanatorium, or National Sanatorium Tama Zenshoen, is a sanatorium for leprosy or ex-leprosy patients situated in Higashimurayama-shi, Tokyo-to, Japan starting in 1909.-Background:...
. There are smaller museums in other sanatoriums in Japan, such as in Tohoku Shinseien Sanatorium
Tohoku Shinseien Sanatorium
Tohoku Shinseien Sanatorium or National Sanatorium Tohoku Shinseien is a sanatorium for leprosy or ex-leprosy patients situated in Tome-shi, Miyagi-ken, Japan, starting in 1939.-Background:...
, Kuryu Rakusen-en Sanatorium
Kuryu Rakusen-en Sanatorium
Kuryu Rakusen-en Sanatorium, or National Sanatorium Kuryu Rakusen-en is a sanatorium for leprosy or ex-leprosy patients situated at Kusatsu-machi, Azuma-gun, Gunma Prefecture, Japan which started in 1932.-Pre-Rakusen-en days:...
, Nagashima Aiseien Sanatorium
Nagashima Aiseien Sanatorium
, or the National Sanatorium Nagashima Aiseien, is a sanatorium for leprosy or ex-leprosy patients on the island of Nagashima in Setouchi, Okayama, Japan, which was founded in 1930.-Background:...
and Kikuchi Keifuen Sanatorium
Kikuchi Keifuen Sanatorium
Kikuchi Keifuen Sanatorium or National Sanatorium Kikuchi Keifuen is a sanatorium for leprosy patients or ex-leprosy patients at Kohshi-shi, Kikuchi-gun, Kumamoto-ken, Japan founded in 1909...
.
External links
- 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