Global Appeal 2012 Launch Ceremony ~To End Stigma and Discrimination against People Affected by Leprosy~
Here in Brazil, both government and civil societies have shown strong commitment to achieve elimination of Hansen’s disease and to bring an end to the social stigma and discrimination. In such a motivated atmosphere, I feel most grateful to hold the 7th Global Appeal here in Brazil.
The very first Global Appeal was held in January of 2006. It was the first call made to the world to address the stigma and discrimination that has tormented the people affected by Hansen’s disease for centuries. From ancient times, Hansen’s disease was feared as an incurable disease that inflicts people as a curse or a punishment for sins committed in the past life. The external damage that some patients suffered, such as skin discoloration and deformities on the face, hands and feet, made the disease all the more fearful. Loss of sensation combined with a weakened immune system caused skin lesions which were difficult to heal. Since there were cases where more than one family member got infected, the disease was mistaken to be hereditary, causing an entire family line to become subject to discrimination.
Once Hansen’s disease was identified as an infectious disease, various countries around the world enforced isolation policies to prevent further infection. Laws that restrict or prohibit employment, marriage, education and various other activities were introduced. These laws were initially written to protect the general public. However, segregating people affected by Hansen’s disease from the population caused the social stigma and discrimination against them and their families to escalate.
When a new treatment called the MDT was invented in 1982, Hansen’s disease became curable. With early detection, it even became possible to cure patients before the onset of disability and deformity. Because much of the discrimination was caused by the physical deformities and disabilities, the discovery of MDT gave me hope that those suffering from society’s harsh discrimination would be set free.
However, in reality, society was not so accepting. Despite the drug’s achievement in dramatically lowering the number of patients worldwide, there was hardly any improvement in the quality of life of each affected person. What I saw were the same saddening scenes of people struggling to survive in the most trying circumstances.
I think that deep down, people affected by Hansen’s disease have the desire to appeal to the world about the social stigma and discrimination that they suffer on a daily basis. However, they have avoided raising their voices because they feared that making their illness public would only worsen the discrimination against them and their family. A Hansen’s disease patient once said,“I am not afraid of the disease itself. The prejudice and discrimination that accompanies it is far more frightening.” This is the sentiment that people affected by Hansen’s disease have lived with for centuries.
I knew I had to find a way to make these silent cries audible to the world. The Global Appeal was conceived to achieve just that. From its conception in 2006, global leaders from different sectors of society such as politics, religion, business and education have given us their support and lent us their voices. This made it possible for our message to reach groups that would have otherwise been difficult to reach.
The 7th Global Appeal which will be announced shortly is endorsed by the International Medical Association and the Medical Associations of various countries. Medically qualified professionals have the knowledge and understanding of the scientific grounds on which the facts of Hansen’s disease are constructed. It is truly significant that they have lent their voices to let the world know that,“Hansen’s disease is a mildly contagious disease. It cannot be spread by casual contact. There are no medical grounds for isolating a person with the disease. There is an effective medicine available without charge. Patients all over the world are being cured with proper treatment.”
Now, if we presented these medical facts of Hansen’s disease to the public, I think that many would understand and even accept them. But if we then put these facts into context and into a more personal situation, such as sharing the same seat on the bus or working in the same office, I believe many would hesitate or decline to accept. Why? Because discrimination and prejudiced sentiments are not based on reason or understanding. Even if your mind accepts the facts, it does not necessarily mean that your heart and emotions will accept them as well. This is why those affected by Hansen’s disease and their families continue to suffer from society’s harsh discrimination and prejudice.
In the long history of Hansen’s disease, there was a time when the notion that Hansen’s disease is a dangerous disease and that the affected people are to be feared was the social norm. In the present time, although we know that this is no longer true, the notion still exists in many societies. This is the invisible wall that excludes those affected from society to this day. It is reinforced each time somebody justifies his or her discriminatory actions or prejudiced sentiments. However, because it is so deeply imbedded in the social norm much of it is done unconsciously.
We cannot change history but the future is ours to shape. I believe that reaching to as many hearts as possible and getting each to become aware of their discriminatory actions and prejudiced sentiments is the first step toward tearing down the invisible wall that has tormented those affected by Hansen’s disease for centuries.
In order to tear the invisible wall down completely, we will need the effort of those who are on the other side of this wall as well. They are the people affected by Hansen’s disease and their families. I believe the long existing prejudice and the discriminatory treatment that they experienced have caused emotions such as fear, reconciliation and subservience to occupy their souls. Despite all of that, I wish that you will all listen to that silent voice within you. And when you feel a transformation taking place, I ask that you find the courage to voice the cries that you have kept silent all these years. In Brazil, India and various other countries, advocacy organizations which are primarily composed of people affected by Hansen’s disease, are trying to tear down the social wall from their side. I am hoping more such groups will come about to bring this wall down. I will give full support for their initiatives.
I would like to conclude by sharing this powerful quote. “Hansen’s disease is not merely a disease, but a challenge to fellowship, a call to the humanization of human life.” These were words of one individual. But at the same time, I believe it represents the millions of voices that departed from this world unheard. We are at a critical point where people affected by Hansen’s disease, their families and society are being questioned on the way we overcome this difficult challenge of Hansen’s disease as human beings.
Thank you for your kind attention.