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Humanizing the Experience

BY :: Aindrila Chaudhuri
Apr 2015

In our blog for April, Aindrila Chaudhuri discusses how societal prejudices tend to affect people living with HIV.

I really have to admit that my knowledge of HIV and AIDS related issues was rather poor till some years back. Most of the information I had earlier was through popular media messages, which were in fact filled with problematic stereotypes. It is only during my Masters in Women Studies, that I became acquainted with a lot of discussions related to HIV and AIDS and which incorporated the feminist critique of the present health models that focused extensively on the intersections of gender, health and human rights.

As a gender specialist, I am now painfully aware of how little I knew before! The feminist discourses helped me develop a rights based approach and I realized how societal prejudices tend to affect people living with HIV. One instance was the issue of problematic targeting of specific sections of the society for HIV related intervention. This often leads to a system of forced testing for these people who are seen as the main transmitters of the virus. As a feminist, I cannot ignore the ethics and confidentiality angle in such cases. It is important to remember that all testing for HIV should be voluntary, otherwise it would end up being a gross violation of a person’s basic human rights and would go against the principle of informed consent.

Over the years, I also have realized that there still is a lot of misinformation floating around about how the infection gets transmitted and certain lifestyle and/or work choices (such as homosexuality and sex work) that are targeted extensively. This more often than not feeds into a culture of discrimination and violence. The AIDS epidemic, although being a biomedical issue, has always been surrounded by stereotypes and negative socio cultural imagery that has led to stigmatization against certain (already) marginalized groups in the society. Certain problematic metaphors, based on predominant socio cultural ideas, are used in everyday language and this often times finds its way into national and international health related policies.

During my personal research on the topic of HIV and AIDS, I realized that although Western biomedicine claims to be unbiased, even the scientific community (which also claims to be value-neutral) while researching the condition, has from the beginning relied upon common stereotypical understanding. For the longest time, “they (medical professionals) excluded important data that did not fit their framework in order to maintain their initial conception of AIDS as a lifestyle disease and thereby inhibited accurate understanding of the course of the disease, while providing scientific support for prejudice against the designated groups (Oppenheimer, G.M. (1992) ‘Causes, Cases, and Cohorts: The Role of Epidemiology in the Historical Construction of AIDS’).”

It is important to remember that all testing for HIV should be voluntary, otherwise it would end up being a gross violation of a person’s basic human rights and would go against the principle of informed consent

As I am closely working on issues related to gender and sexuality, I am slowly realizing the importance of humanizing the experience of people living with HIV. I would also have to admit, many feminist critiques and theories have helped me question the western bio-medicinal model of health and inspect it for what it actually is (as opposed to how we think of it). This model regards people as ‘cases’ and helps in maintaining a hierarchy of knowledge, where the main power rests with the doctors who are often cold and distant (otherwise referred to as ‘objective’). This system is also oftentimes lacking in empathy and can completely disregard the cultural context in which different people living with HIV are situated in.

I would also like to share that as a practitioner, it is important to always maintain a respectful attitude at all times. One way to do this is through the use of sensitive language. UNAIDS recently came up with a set of guidelines that are based on certain good practices from the field. These set of principles and rules stress how vital it is to harbour an anti-discriminatory attitude towards the issues of people living with HIV. In my day to day work, I make sure that I don’t use strong superlatives that give a sense of some sort of a problem that needs ‘fixing’ or points to fatalism. I am therefore, very careful that the terminology I use does not end up invoking feelings of fear and anxiety. For example, I avoid using words like ‘risky sex’ and ‘vulnerable groups’ that can easily give a sense of heavy discrimination towards certain groups and behaviour in the society. After all, language reflects our politics and the values we believe in.

In the past few years, be it during my post graduation studies, my work or even through the activism I am currently involved in, I have recognized that it is imperative to always stick with a rights based approach. A service provider and health practitioner needs to acknowledge and be careful about the issue of power during any sort of intervention. In no way should there be an erasure of agency and neglect of the unique needs of the people living with HIV. Only then can any sort of intervention be truly effective and sustainable in the long run.

Aindrila Chaudhuri (Contributor)
Aindrila Chaudhuri, based in New Delhi, India, works on issues related to gender, sexuality issues and reproductive choices so that people can live with dignity. A post graduate in Woman Studies from Tata Institute of Social Sciences, Aindrila is also a freelance contributor to various feminist websites and blogs.