Eradicating the Stigma

In 1894, while Gandhiji was in South Africa, he was addressing a gathering in Natal. He noticed that some people were standing well away from the crowd, but listening to him intently. He beckoned them to join the rest, but they did not do so. After his talk, as Gandhi started walking towards them, one of them called out “Gandhibhai, do not come near us, we are lepers.”  Gandhi was undeterred. When he went close  he saw that they were a sorry picture. Some had lost their fingers and toes, or hair, some had disfigured facial features. When he asked them whether they were being treated for their ailments he was shocked to hear that no one was willing to come near them, let alone treat them. They said that they were completely ostracized by all, and died a lonely death far away from all others. Gandhi invited this group to his camp, and personally cleaned their festering wounds, and bathed and fed them.

This incident was the start of Gandhi’s lifelong crusade to lift the stigma against leprosy. And the start of one his satyagrahas—the satyagraha to not just treat, but to eradicate the stigma against this other group of ‘untouchables’.

Gandhi’s close friendship and solicitous care of the scholar Parchure Shastri who was a leprosy patient is well documented. They met while both were in confinement in Yerawada jail and Shastri was kept in isolation; the two developed close bonds, Later Gandhi invited Shastri to live in the Sevagram Ashram and personally supervised his care and treatment.  

Manohar Diwan, one of Gandhi’s followers became the first non-missionary Indian to work on leprosy. In 1936, under the guidance of Vinoba Bhave and Gandhiji, he started the Maharogi Seva Samiti, the first indigenous leprosy care centre in India at Duttapur, close to the Sevagram Ashran near Wardha; which is still running.  

Subsequently, the Gandhi Memorial Leprosy Foundation was started, led by Dr. Wardekar, who developed the Survey Education Treatment (SET) strategy to control leprosy, that became the national strategy.

In 1955, the Government of India started the National Leprosy Control Programme for surveillance, which was upgraded to National Leprosy Elimination Programme (NLEP) in 1983 bringing leprosy treatment on its agenda. In 1991, India contained 75 per cent of the world’s leprosy cases. On January 30, 2005, India announced that it had eliminated leprosy as a public health problem, i.e., less than 1 person in 10,000 infected with the disease. India still makes up 58.8 per cent of the world’s leprosy cases.

While statistically India has had a large number of leprosy patients, it would be wrong to assume that leprosy is a disease only of poor and perceived ‘backward’ countries. Most people would not believe it if they were told that just a hundred years ago, leprosy was as much of a stigma in the United States of America. Even today USA is not entirely leprosy free.

Although leprosy was never an epidemic in the United States, cases of leprosy had been reported in the southern state of Louisiana as early as the 18th century. It is believed that these might have been carried by the slaves from Africa. One of the major ports where the ships bringing these slaves docked was New Orleans. As cases of people with the dreadful disease were being reported, it was also clear that these patients were totally outcast, until they died a pitiful and lonely death.

 In 1896 four missionary sisters of The Catholic Daughters of St. Vincent de Paul came to this region. They set up a retreat in Carville, in South Louisiana, to serve the mission of caring for these patients who were totally outcast and ostracized. For the next 109 years a total of 116 sisters made it their life’s mission to work in the leprosarium.

Due to the social stigmas that surrounded leprosy, upon arriving at Carville, patients were encouraged to take on a new identity. As a result, many patients at Carville changed their names. Most patients had very limited contact with family members. Visitors were allowed, but the remote location made this difficult. Even the staff of the leprosarium seldom knew the patients’ real names or knew what town they came from. Most of those who came to the institution, lived there for the rest of their life, and died there.

In 1921 the federal government took over the hospital from the state of Louisiana and it became the National Leprosarium, the only leprosy hospital in the United States.

The Hospital’s treatment facility closed in 1999. The building was converted into the National Hansen’s Disease Museum the same year. This museum honours the leprosy patients—once quarantined on site—and the medical staff who cared for them and made medical history as they battled leprosy. The museum collects, preserves and interprets medical and cultural artefacts to inform and educate the public about Hansen’s disease (leprosy).

For hundreds of years leprosy remained a mysterious disease. It was even seen as the sign of a curse that slowly mutilated its victims. It was thought that anyone who came in contact with a victim would also get it. It was also believed that is was a hereditary disease. As a result leprosy patients became “lepers” in every sense of the term.   

It was Gerhard-Henrik Armauer Hansen, a Norwegian scientist, who discovered the slow-growing bacterium now known as Mycobacterium leprae as the cause of the illness.  This was at a time when the concept of contagion was still poorly understood, and no one had shown that bacteria could cause human diseases. Hansen’s thesis was received with scepticism by the medical fraternity. But his strong conviction in his discovery and unstinted devotion to a lifetime of research changed the way leprosy was approached as a disease. Today it is accepted that leprosy is not hereditary; it is difficult to catch, and it can take many years to develop symptoms of the disease following an infection. Also, people who catch the disease can be cured with antibiotics.

Leprosy was renamed Hansen’s disease in honour of the scientist who made these findings.

While medical advances in the understanding and treatment of leprosy have been progressing, a greater challenge is to change common perceptions and attitudes towards those who have been afflicted by this condition. A large effort towards this was initiated by another crusader, the French humanitarian and journalist Raoul Follereau. It is believed that he first encountered lepers while on a journalist assignment in South America in the mid 1920s. Just as Gandhi had reacted in South Africa, Follereau on seeing a group of people hiding in the bushes, asked his guide who they were. As he later recounted: “… To the guide I said: ‘Who are these men? ‘Lepers’ he answered. ‘…but wouldn’t they be better in the village? What have they done to be excluded?’ ‘They are lepers’, answered the taciturn and stubborn man. ‘At least they are being treated?’ Then my interlocutor shrug his shoulders and left me without anything say. … and it was on that day that I decided to plead one cause for all my life, that …of lepers.”

So began Follereau’s satyagraha. Along with his numerous duties as cultural ambassador for France, and journalist, he worked actively to support projects for care of leprosy patients, and spread awareness. In April 1943 the first conference on this subject was held. In 1953, a missionary Father Balez suggested to Raoul Follereau to create a world day of prayer for lepers. Raoul Follereau chose 30th January, the day that Gandhiji died as the date for this annual Day.

The first World Day of Lepers was celebrated on the last Sunday of January 1954. This day had two objectives: First to advocate that leprosy patients are cared for and treated like all other patients, while respecting their freedom and their human dignity. And second, “to cure the healthy” of the absurd and sometimes criminal fear they have of this disease and of those who are affected by it.

This year on World Leprosy Day let us remember the pioneers who led their own crusades against the stigma. Also re-educate ourselves about this often avoided topic, and join the fight to end the stigma.

–Mamata