Words are not neutral against HIV
03 January 2007
Words such as ‘HIV positive’ and ‘People living with HIV’ are gradually replacing other terms, such as ‘AIDS sufferers’ and ‘victims of the disease’, which used to flourish in the literature about HIV. Why are we witnessing such a transformation? How does it come about? And most important, what does it mean?
HIV is no longer a purely medical issue: the risk of HIV infection and the impact of HIV feed on social issues, including discrimination against women and groups of people who are marginalized such as sex workers, people who inject drugs and men who have sex with men. It is a regrettable fact that people living with HIV are also often subjected to stigma and violence related to their HIV status. Over the past decade the critical need to strengthen human rights as part of an effective response to AIDS and its effects has become evermore clear.
It is well established that language, in the context of HIV, is not neutral. The words we choose and the way we put sentences together to share ideas and information have a profound effect on the way messages are understood and acted upon, or not. Careful choice of language therefore plays an important part in sustaining and strengthening the response to HIV.
At the UNAIDS Secretariat in Geneva, a small team reflects upon and puts into perspective the issues and dynamics that continually emerge in the field of HIV. Their objective is to make recommendations about language usages that are scientifically accurate, that promote universal human rights and the dignity of the individual, that are easily understood and respect how individuals and groups of people choose to refer to themselves.
For example, choosing terms that focus on specific behaviours rather than on people’s membership of groups is a sound approach to avoid increasing stigma and discrimination. It is preferable to refer to ‘higher risk of HIV exposure’, ‘sex without condoms’, ‘using non-sterile injection equipment’ rather than to generalize by saying ‘high risk groups’. Being a member of a group does not in itself place an individual at risk, but his or her behaviour may.
Respecting and empowering the individual is another principle which is the basis of UNAIDS recommendation to avoid terms such as ‘AIDS victim’ or ‘AIDS sufferer’. “These terms imply that the individual is powerless, with no control over his or her life,” said Alistair Craik, who coordinates the UNAIDS Terminology guidelines. “It is preferable to use ‘people living with HIV’,” he added.
Referring to people living with HIV as innocent victims (which has often been used to describe HIV-positive children or people who have acquired HIV medically) wrongly implies that people infected in other ways are somehow deserving a punishment. It is preferable to consistently use ‘people living with HIV’, or ‘children living with HIV’.
UNAIDS Terminology guidelines also provides advice to writers to avoid making some common errors. For example ‘AIDS virus’ should not be written because it is scientifically wrong. “There is no ‘AIDS virus’,” said Craik, “AIDS, the Acquired Immunodeficiency Syndrome, is a syndrome of opportunistic infections and diseases which is ultimately caused by HIV. This is also why, he adds, people are not infected with AIDS but with the virus called HIV.” Because the letters ‘HIV’ stand for Human Immunodeficiency Virus, “it is incorrect to write the ‘HIV virus’,” notes Craik. Similarly it is tautological to write about ‘commercial sex work’ – ‘commercial sex’ and the ‘sale of sex service’ are more concise and precise expressions.
The examples above are illustrations of what writers can find in UNAIDS’ Terminology guidelines. This brief set of recommendations aims to promote language that is gender-sensitive, non-discriminatory, culturally appropriate and which promotes universal human rights. “We ask readers to understand that UNAIDS’ Terminology guidelines are recommendations: different writers have different ‘voices’; different organizations have different areas of expertise and they may choose to define their own preferences and styles; this is both good and appropriate,” said Craik.
UNAIDS emphasises that its terminology recommendations must be considered a work in progress as new issues and dynamics emerge continually.