Grace under pressure

It's not only acronyms that lose their meaning. Take 'stigma and discrimination'. 'We' often refer to these without really thinking about what they really mean.

I remember back in 1996, when we were planning the first national Candlelight Memorial, we prepared a flier referring to the Indonesian term 'diskriminasi'. I guess that even if you don't understand Indonesian, you can guess what that means. Unless you are Indonesian. Very Kamil, then working with Lentera in Jogja, was in the meeting and asked the meaning of the term (I think he knew, but ...).

Although I'm not an etymologist, it always seems to me that, if a word for the concept does not exist in the language, chances are the concept does not exist in the country. After all, you need a word to describe the concept. And this is especially true for discrimination. In a feudal society (like that in many parts of Indonesia), you don't know you have rights, let alone what those rights are. So how can you talk of violations of rights?

Anyway, in the end we responded to Very's concern (as we still do) by adding in parentheses 'perlakuan yang tidak adil (unjust treatment)'.

Most HIV-infected people in Indonesia (and their families) have experienced discrimination. In my experience, it has usually been caused by lack of knowledge or understanding about HIV, and fear of infection resulting from lack of awareness of how HIV is transmitted (and not transmitted). Of course there are people who are just plain nasty, taking a moral (and often hypocritical) stance. But in my experience this is relatively rare in Indonesia. More often what is seen as discrimination against people with HIV in the health care settings is in fact the endemic discrimination faced by the poor. Those with money rarely face discrimination.

Stigma is more difficult. Again, there's no Indonesian translation, although we often refer to 'cap buruk (nasty mark)'. Actually 'cap' is perhaps more often understood to be the mark made by a rubber stamp (or a finger print). Indeed, recently infected people often feel like there is mark saying 'HIV' on their forehead. And this is indicative that self-stigmatization is at least a significant part of the problem.

All this came to mind at a meeting of the STOP TB Partnership Forum yesterday at which Care International presented outcomes of their TB program in parts of Banten (the province in Java west of Jakarta). In surveying community attitudes to TB, they changed the question on stigma to refer to 'social pressure'. I'm sure we could argue over the term for ever, but at least this caused me once again to think about what we really do mean by this term that we so often use without thinking.

Babé