Schisto-so-what? The importance of careful language when talking across sectors

By Kate Hawkins, Pamoja Communications

I am a real newcomer to the world of Neglected Tropical Diseases (NTDs) and so it was a great privilege to attend the recent meeting on Female Genital Schistosomiasis and HIV. Research on, and control of ,schistosomiasis goes back to 1851 with its discovery by Theodor Bilharz. So like many people I left the meeting somewhat horrified that a list of the existing studies which look at HIV and schistosomiasis together could practically fit on the back of an envelope.

But I am also excited that such a disparate group of knowledgeable people had the chance to come together and try and make sense of what we already know and what a future research, policy and implementation agenda might look like. We need more of these types of conversations which cross geographical, health issue, and disciplinary areas if we are going to make progress.

Are we talking the same language?

I was amused when I came across this Tweet on the difficulty of communicating about NTDs.

Many researchers share James’s frustration about the seemingly impenetrable language employed in the sector.

I am immersed in a world of academics and not so easy to understand acronyms. When we are passionate about our own particular field of study it is easy to fall back on technical language and jargon. Overcoming this first barrier is a part of better communicating across the potential divide between the diverse stakeholders who need to work together on HIV and schistosomiasis.

With talk of haematospermia, eosinophils, cytokines, sandy patches, qPCR, anodic antigens, R-PZQ, plexus rectalis, uterus-vesicalis, schistosomula, IgG antibody concentration, NK-cells, interleukin-2, Neopterin, petechial, eosinophils and more, my Internet search engine was working overtime at this meeting as I tried to figure out what was going on! This is despite my helpful colleague Russell giving me a copy of Bambo has Bilharzia in advance of the meeting!

Technical language is fine at a meeting of health practitioners and researchers but it will take some effort to put some of the evidence we were talking about into formats that speak to others. The Female Genital Schistosomiasis Atlas, is one such tool for clinicians but we are going to need many more for all the other target audiences that we need to help understand this information.

Beyond the technical

When you talk across different areas of health it isn’t only the technicality of language that can be a barrier to understanding.

Much of my previous work has been on sexuality and HIV. At the HIV and schistosomiasis meeting I heard terms like ‘prostitute’ and ‘promiscuity’ being used, and that was a bit of a shock. There has been a great deal of work on how language can (re)enforce notions of stigma, blame and shame which are detrimental to the HIV response. When I hear words that I find insulting, my brain immediately stops processing information. So even if the point that was being made was intellectually brilliant it is lost to me.

Debates about language and HIV are not new, and as this UNAIDS article points out, “Words are not neutral against HIV”.

UNAIDS makes the following recommendations on the use of the words prostitute or prostitution, “These words should not be used. For adults, use terms such as sex work, sex worker, commercial sex, transactional sex, or the sale of sexual services.” The term ‘sex work’ was coined by Carol Leigh in 1978 and it is widely used in public health. This language guide from InterNews in Kenya points out that the word ‘promiscuous’ is both “judgmental and accusatory.”

When it comes to my ideas about language you may think that I am an uptight, politically correct Brit. You would be absolutely correct in that assumption. However, if the schistosomiasis and HIV worlds are going to interact in a fruitful and mutually supportive way then we need to establish a more correct cross-talk. A first step will be to understand and appreciate each other’s language. In the words of Maya Angelou,

“If you want what you’re saying heard, then take your time and say it so that the listener will actually hear it. You might save somebody’s life. Your own, first.”

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