Leprosy stigma
[2] 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.
[3] 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.
[5] The word stigma originated from the Greeks who used it to "refer to bodily signs designed to expose something unusual and bad about the moral status" of a person.
[1] These bodily signs can be thought of as the lesions causing physical deformities in a person's skin in the context of leprosy.
[6][7] Stigma itself is constructed based on "historical processes, cross-cultural differences, and structural inequalities," which determine social norms.
In Western Europe, it reached its peak during the Middle Ages, at a time when the disease was viewed as rendering the person "unclean".
[11] 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.
[13] 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.
The concept of heredity has been deeply rooted, and when leprosy was thought to be inherited, persons with the disease (and their children) were shunned.
The disease's long incubation period resulted in mystery for centuries about its origins, inspiring horror, fear and disgust.
In current-day China, leprosy is strongly associated with poverty and stigma remains a significant barrier to effective treatment.
Stigmatization of leprosy began as "a relatively unknown disease [changed] into a socially and morally threatening phenomenon".
The entire county is now within what is known as the Kalaupapa National Historical Park, which preserves both the major structures of the settlements and the associated environment of the area.
Kalaupapa was an innovative approach to a solution for leprosy by Westerners, which became a model for controlling disease worldwide: it was the first time ostracized and shunned people were torn from families and transported to a remote prison island.
However, dehumanizing medical rules and regulations regarding physical contact with Kalaupapa residents persisted even into the 1980s despite the discovery of curing sulfone drugs.
Patients were not allowed to leave the hospital grounds, were not permitted to vote in national elections, and any outgoing post was sterilized by baking.
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.
On the May 7, 2007 Lou Dobb's Tonight program, Madeleline Cosman, a scholar and lawyer—not physician, falsely stated "there have been 7000 cases in the past 3 years.
[29] Stanley Stein, a blind patient at the national leprosarium at Carville, started The Star, a crusading international magazine against leprosy stigma.
Although the goal for the complete eradication of leprosy in 2020 seems infeasible for "zero patients" due to the long period of M. leprae dormancy, the WHO has shifted towards a "Final Push" Strategy focusing on early detection to reduce disabilities.
[33] 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.
[34] 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 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.
[35] On 16 August 2018, 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.
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.
