Stigma

A fascinating morning at work, hearing from Dr (almost Dr Dr) Bassey Ebenso, formerly a Leprosy Mission doctor, then Country Leader for TLM Nigeria, but since 2008 a PhD student at the University of Leeds. He and his wife Jannine, who is TLM's Global Disability Adviser are visiting Scotland at the moment, she is speaking at an event organised by the Network of International Development Organisations in Scotland (NIDOS) on Friday which looks at inclusion in education. Bassey's research has been looking at leprosy stigma, by researching the experiences of people affected by leprosy from the Yoruba people in western Nigeria. Those of you who have been following this journal for some time will have heard plenty about leprosy, but for those of you who don't know anything about it, it's a disease caused by a mycobacterium from the same family as TB, but it affects the nerves and if untreated can lead to anaesthesia and damage to limbs and eyes, causing (directly or via injuries and infections stemming from the anaesthesia) impairment and disability. It is thought by many to be something of the past, sadly this is not the case, there are still 700 new cases discovered each day. Leprosy is marked by stigma, the like of which can be hard to understand, and part of what Bassey has been studying is some of the root causes of stigma (best intentioned efforts of public health professionals in the past didn't help, never mind the historic and cultural issues), with the aim of seeing how effective work by organisations like TLM and national health services have been in reducing stigma. The general principles will also be applicable to other diseases like HIV/AIDS and wider disability issues. Cultural factors and the exact details of why stigma exists in a particular community and how it is expressed change the way it needs to be dealt with, so general principles in this area are really important. Bassey's viva (exam) is just a few weeks away, so we are all praying that he will be awarded the PhD with as few changes as possible. He is looking around for lecturing jobs, so he could end up pretty much anywhere.

I have been working over the last week or so on putting together the year end report for the Scottish Government on the project they fund through TLM Scotland in the Chittagong Hill Tracts in Bangladesh. The report has to include a case study (we've put in two, as the project has two areas of focus, so there is one looking at economic development and one at advocacy and rights). One of them is that of an elderly lady who noticed discoloured patches on her skin, and went to local doctors and traditional healers, but no-one could help her, even though there was a considerable sum of money spent. As the symptoms developed and became more obvious, her neighbours began to suspect that she had leprosy and began to avoid her and exclude her from community activities. One of her neighbours contacted TLM and she was seen by a staff member, who diagnosed her leprosy and gave her Multi Drug Therapy (the standard treatment, which cures leprosy within around 6 months). The community wanted her sent out to live in the deep forest. She was living with her son, who suggested to the villagers that he build her a shelter next to his house and she could live there in isolation, but that idea was rejected. She suggested that a shelter be built several kilometres away on land she inherited, but that land was considered too near to the road that the villagers use, so she was to go to the forest. TLM heard about this situation and came to the village to meet with community leaders (which in that part of Bangladesh is a lot of people as there are tribal leaders, political leaders from various different levels and structures, plus religious leaders). Education is vital, as most people depend on myths, proverbs and whispers when it comes to leprosy, and don't realise that it is easily curable, hard to catch, in fact within a matter of days people taking MDT are no longer infectious, and that people who have it, or have had it in the past don't pose any danger to their neighbours. Once the community leaders understood this, the lady was allowed to stay. She said afterwards that if she had been sent to the deep forest, she would probably have killed herself.

Irving Goffman defines stigma as "The process by which the reaction of others spoils normal identity", a definition which I love, as it gives a real insight to exactly how the treatment you get from others can mess with your head, eroding any sense of self worth you may have had. It is easy to read examples like this, and think 'I'm glad that doesn't happen here', and it doesn't, at least not in quite so obvious a way. But stigma is real in our culture too. People who have had a mental illness, for example, can face stigma that might be more subtle, but is just as real as that faced by the lady whose story is told above, and I'm sure you can think of other examples.

Hmm, so much for a quick blip!