"A long way from the saying to the action"
The Principles & Guidelines behind the UN Resolution “Elimination of discrimination against persons affected by leprosy and their family members” have been established for over five years and Mathias has conducted research* to find out if they have, in reality, been put into practice.
Earlier this year, Mathias disseminated a questionnaire among organisations of people affected by leprosy, leprosy hospitals and ILEP Members worldwide. Mathias received responses from 265 people affected by leprosy from 20 countries about their experience of stigma. A wide cross section of people were interviewed: men and women, old and young and two-thirds (67%) had grade 2 disabilities. All had been affected by leprosy for at least one year and some (40%) for over 15 years.
Mathias explored four major, different areas where stigma can be found: where someone might be allowed to live, how they experience work, marriage and access to public places.
Only half of Mathias’s respondents said that they were free to choose where they wished to live.
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.
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.
Less than half of those surveyed said that people affected by leprosy enjoyed equal access to public spaces and that included transportation.
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 whom 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.
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.
He emphasised that the latest report of the Human Rights Advisory Committee of the United Nations insisted on the participation of persons affected by leprosy and the involvement of the state in order to implement the Principles & Guidelines.
He said “It’s great to have the Principles & Guidelines. It’s great to have inclusion as part of the WHO GLP 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 & Guidelines represent an ideal that seems very far away in the case of many countries.”
Mathias ended his presentation by quoting 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 & 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.”
Mathias would like to thank Anna van ‘t Noordende from ILEP Office and Vera Lacey from Lepra. He said “It would have been impossible to have completed with survey without them. I would have been lost.” He added “I would also like to credit the ILEP Office, ILEP Members, partner organisations in the field, affected people organizations and other helpful people for assisting with the translation and gathering the data. Last but not least, I would like to thank the affected people for trusting us with their story.”
*The basis of Mathias research was a survey, the results of which will be published in a future edition of academic print journal Leprosy Review. Quantitative and qualitative analysis was carried out by Vera Lacey from Lepra and Anna van ‘t Noordende from the ILEP Office.