There is a disease that is completely curable. It is phenomenally hard to contract. If caught early, it has little to no effect on those who have been touched by it. Yet, mention of this disease fills people with more dread, with more gut-level loathing, than any other. The disease is leprosy. It is a condition that destroys lives.
I have been working on the front lines of the leprosy-elimination battle for 30 years now, and in that time I have seen it transformed from a frightening mystery to a mild condition less threatening than the common cold. What has not changed in that time is the degradation that our societies continue to heap on those affected by the disease.
A number of years ago, I visited an Indonesian leprosarium to examine the condition under which its residents lived. While there, I met an 85-year-old woman who had been living at the facility since she was 12. This woman was healthy and sprightly. This confused me, so I asked her, “You’ve been healed for a long time now; why don’t you go home?”
Her cheer suddenly evaporated and she said, “Because that would do nothing but bring trouble and unhappiness to my family.” She told me that she had no choice but to die alone, cut off from family, at the sanitarium.
For thousands of years, this kind of isolation in both life and in death, has been the shape that reality has taken for those with the disease. They have been cast out of their families, severed from society. They have been driven out to the wild places of the world: to inaccessible islands or remote mountaintops. There, they have had to live out an isolated existence. There, they have died alone.
Throughout history and in all societies, leprosy has been loathed as a heavenly punishment. Those with the disease have been degraded, and treated as things that should not exist in society.
Unfortunately, this continues today. For decades, nations enforced legal discrimination against those with the disease. However, as law is nothing more than a reflection of social attitude, the abolition of the leprosy laws has not had much of an effect on the state of individuals’ lives. Many who were taken to leprosy facilities under those laws will remain there for life at the demands of hometowns or family.
This is because not only those who have had leprosy, but their families as well, continue to be denied the most basic human rights: marriage, education, work. So families cast out members with the disease. They hide their existence. Those affected by leprosy will often even be stripped of name and family. They are refused a place in the family grave. Once a person contracts the disease, they are branded, not only for life, but for eternity.
For centuries, those with leprosy have been unable to protest these conditions. They have found that to cry out is to stand out. This has only worsened already unbearable situations, exacerbating the discrimination. And so they have chosen to remain silent, to remain in the remote places. Paradoxically, this has deepened the mystery of leprosy and deepened the overall stigma.
This is how it has been. But today this disease is curable. The cure is free, anywhere in the world. If the disease is caught early, there is no deformity. The bacillus is remarkably weak and difficult to contract. There is nothing to fear.
So why does the discrimination not end? Why does the stigma remain?
The reason for this is simple. Fear. For thousands of years, this fear has attacked with two prongs. The first was disfigurement. Leprosy was a disease that did not kill, but instead progressively twisted the hands and altered the faces of its sufferers. Then there was the mystery of transmission. Leprosy seemed to arrive out of the blue, and even today, we are still not completely sure how it is transmitted. People were terrified of what they did not understand. That fear destroyed lives on a breathtaking scale.
Since leprosy became curable in the 1980s, 14 million people have been cured. It is estimated that, in that time, a total of 20 million have had the disease. If these people’s families are included, the number of people scarred by leprosy-related discrimination rises to an appalling 100 million worldwide. This is a stigma that transcends the boundaries between race or religion, between developed and developing status.
This is a major human rights issue — one that has remained so well-hidden that it has never been addressed by an international human rights body.
Today, those affected by leprosy have little to fear from the bacillus. What is terrifying is society’s attitude. Today, leprosy is a disease of society. The question is, what can be done?
As with any malady, the answer is to find a medicine that matches; for leprosy, this means a social cure for a social ill.
Happily, in this area the fires of hope have begun to burn. On Aug. 9, 2004, the pleas of those of us working on the front lines were heard for the first time in history by an international human rights body. On that date, the United Nations Sub-Commission on the Protection and Promotion of Human Rights resolved unanimously to conduct an investigation into the leprosy as a human rights problem. Subsequent to the results of this study, it is hoped that the United Nations Commission on Human Rights will then devise guidelines for national governments, international organizations and nongovernmental organizations, as they coax social attitudes away from the damaging paths that have been followed for millennia. This is a major step.
Our treatment of those with leprosy is a shameful chapter in human history. However, I firmly believe that its end is not far off. I thus ask for your support so that those affected by leprosy can return to society, in pride, so that they no longer need to say, “We will only be able to go home as smoke from the crematory chimney.”
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