People affected by leprosy have a fight on their hands. They are fighting for their dignity, and the enemy is stigma.

　

Stigma is an expression of a social reaction to anything that is different, unknown or socially unacceptable. Stigma is an attitude of mind born of ignorance or prejudice. Therefore, if stigma is to be abolished, we have to change the mindset of society.
　Stigma poisons the psyche of ordinary citizens. It creates fear, from which spring bigotry and violence. Stigma becomes the law. Today, there are many laws in India that place people affected by leprosy at a disadvantage.

　

　

　

Stigma affects individual relationships. Within society as a whole, it influences social interaction, religious practice and the foundations of marriage.
　In the economic realm, it can result in people being unable to make a living. Where the political process is concerned, it prevents people from voting and taking part in the decision-making process.
　Stigma also denies people the opportunity for development. All these things add up to a negation of basic human rights. The result is that people are excluded from society, through no fault of their own.
　Many diseases exist in the world; among them, leprosy causes stigma by the mere mention of its name.
　But isolating people from society on the basis that they have leprosy is wrong. Defining people by their disease cannot be justified.

　

　

What can be done? The first thing we have to do is to empower cured persons. They must be given the right to decide their own future. They must be given self-confidence. At the society level, policy must be re-thought. All existing programs must be reviewed.
　What instruments are available to effect change? Advocacy, for a start. Advocacy is a tool for changing the mindset of society. In this, the role of the media is important. Creating awareness that leads to action is critical. Here, Lokdoots (special communicators) can play a significant part. The example of people who once had leprosy who now fill important social roles such as teachers will help in changing attitudes.
　The government can create the social context in which such interaction can occur, but it is up to individuals to make it happen. In the words of one cured person, “If society does not come to us, then we will go to society.”
　Above all, it should be pointed out that persons affected by leprosy don't want charity; they want their human rights. And increasingly, they are prepared to stand up and fight for them.

　

Dr. S.D. Gokhale is chairman of the International Leprosy Union, India. This column is based on a speech given by Dr. Gokhale on May 16, 2005, in Chennai, India.

　

●Over the past two decades, the global caseload of leprosy has fallen by almost 90%. At the beginning of 2005, around 0.3 million patients were registered for treatment, and during the year 2004, about 0.4 million new cases were detected globally. (WHO)