Let's talk about HIV

     A couple of days back, I shared a picture with my followers on an Instagram story and WhatsApp status with a question. It was a picture of a smiling couple, accompanied with the following question:

One of them is HIV positive. Guess who?

    A lot of people did answer the question. Initially, the votes received were higher for the man, while later the voters started to choose the smiling woman. I posted a follow-up question, asking the voters the reason for their choices. 

    Here are some of the answers I got:

     “I feel it was the guy. He looked quite weak and frail.”

     “The guy looks kinda sick, some muscle wasting signs on his face”

     “None of them. We cannot go by appearances and it is wrong for us to think badly about someone.”

     “He looks weak.”

     “I feel it is the girl”

     “It’s her. But I want to say it’s him.”

      “Him? But I guess judging is not right.”

      “None. You cannot judge by looks who has it and those people rarely come out in open”

      “Their smile matters.”

      “People are stupid to judge on looks alone.”

      “I guess her. Reason because I guess the person who knows end of their life live it to the fullest and enjoy every moment of it.”

    There was no other information shared along with the picture. I did not specify anything – their names, their age, their health chart – nothing! This social experiment was to gauge how people would react to the abbreviation ‘HIV’, without knowing about anything else, but share their opinions based on looks only and what they do know about HIV.

    The tally at the end looked like this - 42% voted for the guy, while 53% voted for the girl and remaining 5% voters chose to abstain. Interestingly, majority of the people who voted for him being HIV positive were men and almost every other woman in the list voted for the girl. 

    It is the woman, Jennifer Vaughan, who is HIV positive; her viral load at an undetectable level. She is a fitness enthusiast, has a YouTube channel where she documented her whole journey from the time she was diagnosed with HIV to achieving undetectable levels, a HIV advocate and a doting mother to three kids. The man in the picture is her husband. One look on her Instagram page shows how much full of life and positivity energy this woman is.

    This little experiment proves one thing – we still have a long way to go in creating awareness about HIV/AIDS. These two could never have been infected. But after I mentioned the same in the question, everyone started looking at the picture with a lens, trying to pick some fault from their looks. It seemed a lot of the voters, categorically men, equated the man as having HIV because he looked weak according to the reeponses. Contrastingly, the voters (mostly women) chose the woman as having HIV as she is smiling and looks full of life. Was it because they believe something like HIV cannot deter a woman’s spirit? Probably true. 

     A more sensible answer would have been to simply ask for more information regarding them or simply stating that it does not really matter.    

     The responses are not disheartening. In fact, it highlights on how much of HIV awareness is required, all the way down to grassroots levels. Despite having a ton of information on the internet available at our fingertips, it seems many think HIV is a sign of death – a fate is sealed, the stigma deeply rooted in our subconscious that has told us having the virus in a body means doom. Well, Jennifer would like to differ.

    Even the minimal responses which I received from the 5% of people, who chose to abstain, the question felt wrong to them as they thought guessing who has HIV is judgemental. It was as if their subconscious has already told them that having HIV is inherently bad and YOU, as a person thinking or knowing about someone else having it, is wrong. 

    I would again indirectly attribute this kind of thinking to the widespread stigma associated with the virus. Whenever we hear about someone being HIV positive, we automatically tend to assume that they must have contracted the virus through unsafe sex most likely, while the virus can be spread through other means like contaminated syringes, blood transfusion, etc. We tend to view and treat these people in a different manner than we are with others. Our behaviour changes around them – we either become too judgemental or take pity on them. Ryan White, an American teenager was forced to leave school because of him testing positive for HIV as a boy through blood transfusion, is a classic example of what happens to a person, who has been at the receiving end of the stigma associated with this kind of thinking. 

    Let me share an incident from my past.  

    After my mother’s passing from AIDS, we had moved her mattress and kept it out of her house as we intended to discard it. It had worn out over time as my mother laid over it the whole time and was therefore, of no use further. The next day post her funeral, I was on my way down to get some stuff, I was accosted by the society’s secretary. We would not even look at me and spoke in a rather crude voice, ordering us to throw the mattress away as it may spread the same disease to others in the building. 

    A 15-year old boy is asked to take care of a mattress, so that other people do not contract the disease your mother died from.

    Over the years, I had still continued to experience this kind of behaviour from random people. 

     Elders who knew my parents asking if me and my other siblings have been tested for HIV over the subsequent years, asking me how my mother contracted the virus, people avoiding the bench outside a government HIV test clinic and eyeing me suspiciously while I waited for my turn, etc. such events make you realise that HIV stigma may never really go. 

     How we can deal with this stigma then? By educating ourselves more on HIV and dispelling our in-built myths related to it. There is a virtual mine of data available on the internet and a simple google search will draw up the results that answers each and every one of our doubts. Spread awareness by educating more people, who do not have much knowledge on the matter. This entire experiment and this post is an attempt by me to generate a discussion on the topic (oddly though, I published a similar, albeit a very grim blog post, related to AIDS back in Jan 12th 2015 – exactly five years back).

     The way to tackle the stigma associated with HIV is to openly talk about it. Taking small steps like stopping your friends from cracking jokes related to this and AIDS can go a long way in changing the way people think about it. Not behave like prudes when it comes to talking about safe sex, precautions and other methods to make ourselves more aware about this. Australia, a country with very low HIV numbers, is a prime example of how awareness and education can stem the spread of HIV, simply because of people being armed with knowledge related to the same.

      It is only through knowledge and dialogue can we bring about the change we need in our society. 

      An HIV positive person does not need your pity or judgement. They are people like you and me, who just want empathy and understanding on your part or get out of their way. With science having made so much advancement in this field, a person’s lack of knowledge related to HIV reveals their own ignorance, nothing else.

      What do you guys think? How can we increase awareness about HIV in our neighbourhood and tackle the stigma associated with it? Do let me know in the comments. 

(Follow Jennifer Vaughan on Instagram at @vongirl24)