For most of us, our understanding of leprosy is the sight of bandaged beggars on the street corner, often with deformities in the face or limb. A century ago, leprosy patients were viewed as objects to be hidden away. Today, leprosy is a disease which is easily treatable and leaves no scars if detected in time.
Amongst illnesses, leprosy is unique in that it was looked upon as a physical manifestation of sin. This coupling of religion and medicine had a profound impact on the treatment of patients. The West brought in its own interpretation of leprosy into India. In medieval Europe, patients were herded into leprosariums, which functioned more as almshouses than as hospitals, places of seclusion and prayer.
In India, treatment of leprosy was known to ayurveda and chaulmogra oil was the only treatment used globally until the 1920s. While patients were isolated in homes or regarded as objects of shame and exiled to the outskirts of the village, they were allowed to congregate at temples and gather alms.
The first major investigation into leprosy in India was by the Leprosy Commission for India in 1889, which concluded that leprosy was non-contagious, only “mildly contaminating” and there was no need to confine and segregate patients.
But the voice of science was ignored and instead the colonial government enacted the Lepers Act of 1898, which authorized the forcible confinement “of any patient in whom the process of ulceration has commenced”.
It was a typical colonial solution to a health issue, equating vagrancy and ulceration with contagion. Unfortunately once canonized as legislation, many started to believe that it must be scientific.
If we are looking for a defining moment for the modern scientific understanding of leprosy it was in 1874 when the Norwegian doctor A. Hansen identified Micobacterium leprae as the causative agent of leprosy. In India few were willing to listen and patient care remained on medieval lines.
There was complete agreement amongst Indian elites, missionaries and the donating public in Britain that patients were to be isolated and sexually segregated and that ulceration was to be hidden from sight. But not everyone toed the line; it is heartening to note that segregation was not enforced by the Mission to Lepers (later renamed the Leprosy Mission), though it might be in its affiliated asylums, and it was enforced in virtually all government institutions from 1888.
There are also some heartening stories of patients’ resistance and even organized strikes in some asylums in the 1930s; it is a disservice to see the patient always as a victim.
In the 1920s, the establishment of the Calcutta School of Tropical Medicine brought an era of scientific intervention, removed the obsession with ulceration and led to the emptying of asylums. Finally in the 1980s, in India with the introduction of the new, powerful multi-drug therapy was leprosy finally to be defeated; the triumphant moment for modern medicine.
The tussle between sin and science is not over; it is being re-enacted in other illnesses, especially AIDS where notions of blame, morality and sin continue to hamper effective medical intervention.
Leprosy is officially not a public health problem in India since 2005 but there is a human face also.
To rehabilitate the recovering patients we have also to remove the trauma. Art of Living Foundation has conducted Nav Chetna Shivirs (Breath-Water-Sound Workshops) with yoga and meditation programmes with wonderful results. Typically the care-givers sit together with the patients. This makes the One World Family or Vasudeiva Kutumbakam an experiential reality not a mere concept.
At long last the sinner has become a patient. World Leprosy Day, Jan 31, is a day to remember.
