Making a difference in policy and practice
The UN Principles and Guidelines for elimination of the discrimination against persons affected by leprosy and their family members were adopted in 2010. Six years later, Mathias Duck, a member of ILEP’s Advisory Panel, undertook research to find out if they were put into practice. He received responses to a questionnaire from 265 people affected by leprosy is 20 countries about their experience of stigma. Respondents included men and women, old and young, and 67% with visible (Grade 2) disabilities. All had been affected by leprosy for at least one year; 40% had been for 15 years.
The survey explored four major areas where stigma can be found: where someone might be allowed to live, how they experience work, marriage and access to public places.
Residence
Only half of Mathias’s respondents said that they were free to choose where they wished to live.
Work
More than a third of respondents thought that people affected by leprosy were not treated equally at work in terms of hiring and promotion. Two thirds had experienced discrimination.
Marriage
More than half of the respondents thought that leprosy was often or frequently used as a reason for a denial of marriage or grounds for a divorce. In some countries, (China, Liberia, Guinea Bissau and Afghanistan) this figure was much higher.
Access
Less than half of those surveyed said that people affected by leprosy enjoyed equal access to public spaces and that included transportation.
Discriminatory language
More than a third experienced discriminatory language being used against them. One in five respondents heard discriminatory language used against other people.
Recurring themes experienced by people affected by leprosy were as follows:
- abandoned by family or forced to leave home. (Two in five respondents knew others affected by leprosy who were separated from their family because of their diagnosis)
- fear of leprosy
- visible signs of leprosy seem to worsen stigma and climate of secrecy
- problems using public transport
Participation in Policy-making
Mathias asked his group of respondents if people affected by leprosy are involved in decision-making for policies that impact on their lives and a third responded that they were not involved. However, one fifth had been involved.
State involvement
12% or one in eight respondents were aware of action taken by a state to abolish existing discriminatory laws. 15% confirmed the state’s involvement in family reunification, many people (46%) were not aware of the state’s involvement in family reunification. A quarter of respondents said that the state did not provide information about leprosy to community leaders. Mathias said that there was little or no evidence of the state’s active involvement as per these statistics.
In conclusion, Mathias summarised that:
- Discriminatory practices and language are still largely part of the experience of persons affected by leprosy.
- There is little or no evidence of the state´s involvement in the elimination of discrimination against persons affected by leprosy.
- The participation of people affected by leprosy is still limited.
In commenting on the findings, Mathias said “It’s great to have the Principles and Guidelines. It’s great to have inclusion as part of the WHO global leprosy strategy, as well as the ILEP strategy. We now need very concrete steps to be taken both at the international and the national level. We know that the Principles and Guidelines represent an ideal that seems very far away in the case of many countries.”
He quoted a Paraguayan proverb “Del dicho al hecho hay un largo trecho” (“from saying to action there is a long way”) and he urged policy makers to keep moving in that direction so that every year, every month, every week and every day, the Principles and Guidelines become more and more real in the lives of people affected by leprosy so every person affected can experience inclusion in their everyday life.