April 2022. This month we have completed the main part of our pilot project, which is to find out how people affected by leprosy can collect facts and evidence about human rights violations in leprosy. The team of young people affected by leprosy was in Jeneponto district for 10 days to investigate 5 cases of possible human rights violations with the support of the management team. Every evening we discussed the results and made plans for the next day. It was hot and most of the team members fasted during Ramadan, which only increased their will to be good fact finders. A week later we conducted a 3-day workshop in Makassar to analyze all the results. We did textual analysis of all transcripts and discussed the circumstances of each of the 5 cases in detail. Not all cases turned out to be simple and easily detectable violations.
We also identified 3 problems common to many of the cases: delayed MDT delivery, unfulfilled rehabilitation referral, and the pervasive stigma.
We now need to follow up on a few remaining issues in the field, which will be dealt with by Jeneponto’s 3 team members. The final steps will then be to formulate a legal statement for each of the cases and to write “guidelines” about our experiences, which hopefully can be useful for other groups of people affected by leprosy to investigate and prove human rights violations in leprosy.
We thank Sasakawa Health Foundation (SHF) for supporting this important project.
