4) People Affected by Leprosy as Working Partners
Chair： Ms. A.S. Law
"TO get rid of the stigma, we have to have self-confidence first"
―Cheng Li Wang, China
"We used to say that if society changes, we will be able to change. But we should not rely on this. We should discard this attitude and adopt the belief that society will change because We Ourselves Change. Let us believe this and make our lives rich and rewarding ones"
―Miyoji Morimoto, Japan
"People affected by Hansen's Disease do not need charity, but the opportunity to show we are capable, and in so doing perhaps change the world"
―Christiano Torres, Brazil
In order to achieve a world without leprosy it is essential to harness the invaluable resource which is represented by persons affected by leprosy. We must all work together as partners in this global effort. Promotion of a positive self image and the projection of a positive image in society is at the core of the issue.
To this end the use of non-labeling, non-stigmatizing language is of primary importance. Labels such as PALs, victims and sufferers must be avoided.
In some countries work has been initiated to address the social and economic aspects of leprosy and some organisations have made this a priority. However, much, much more needs to be done.
We have identified the following AREAS FOR ACTION：
・ Guidelines for appropriate terminology are needed.
・ Self-confidence among persons affected by leprosy needs to be promoted.
・ Discriminatory legislation and practices continue in many areas and present barriers to full participation.
・ Every individual affected by leprosy has the right to information, both about the disease & treatment, and regarding available social and psychological support.
・ People involved in leprosy-related work need to develop a greater level of commitment to working in partnership with persons affected by leprosy.
・ Information and understanding on the part of the general public and health workers needs to be increased.
・ Stigma and prejudice are still major problems in many countries and are often perpetuated by the media and fundraisers. It is important to work with people affected by leprosy to analyze and identify factors that influence the level of stigma.
・ This will enable the development of appropriate strategies to correct misunderstanding about the disease and misconceptions about those individuals affected by it.
