I recently attended a conference in which the surprisingly low figures quoted in the recent government study on the number of people affected by HIV in India were discussed. Last year, a study by the UNAIDS quoted the figure at 5.6 million. As per the Government survey released on July 6th 2007, the number is between 2.5 and 3.1 million. Congratulations. The figures have reduced by 50% in the span of one year.
But social activists and organizations committed to the cause are not convinced. They have several counts on which to be displeased –Allegedly, there is no transparency with respect to the details of how the study was conducted. Secondly, the sample was not a representative one- the participation of all subjects was purely voluntary.
It is this second point, which is of interest to me. Testing for HIV is entirely voluntary. That means, if I don't wish to find out if I am HIV positive, no one can make me.
I am of the opinion that it wont be a bad idea to remove this heavily loaded term- "consent"- from HIV testing. All those who have jumped out of their seats arguing freedom of choice, human rights and so on may kindly sit down and hear me out first.
Take a moment to think of why testing for AIDS is consent based. It is because of the fear of stigmatization. The sad fact is that people living with AIDS are ostracized by society, so this fear is justified. But by making testing consent based, we are in fact making the following admission – "If you do turn out to be HIV positive, we cannot assure that you will not be treated like scum. Nor can we offer sufficient support- medical or emotional (the latter being more necessary)". People present at the conference said it was "impossible" to ensure safe testing and stigma-free living in case we decided to test everyone. One woman justified consent based testing precisely on this argument – "if we carry out the test, and find out that the person has AIDS, we don't have anything to protect them from the stigma and discrimination they are likely to face." Fantastic. You deserve a pat on the back for your honesty.
All this drama about consent is a cover up. It emerges from a desire to absolve oneself of the responsibility of the mammoth task of trying to change the mindset of the majority.
There needs to be a shift in perspective. You cannot combat a widespread illness unless you know the magnitude of the problem. The focus should be on finding out more and more people who need help, and offering it to them when it can still be of help. The focus should be on removing their fear, and on ending the discrimination and stigmatization that people with AIDS face every single day (rather than reinforcing it by allowing the affected persons to hide because of a fear that, ideally, if the society were made up of decent people, would not be present at all).
The stigmatization will not end if you say, "I will not test you if you don't want to be tested. Because I understand your fear of social and personal rejection".
We can do more if we say, "Come and get tested. For your own safety and that of others. And if you test positive, I promise to stand by you and help you get through this in the best way possible."
Also, how on earth do you expect the numbers to be exact or even close to accurate if participation is consent based? What struck me was the irrationality with which consent based participation was being rejected by those people who were in support of consent based testing- "Only those people who are sure that they will not test positive will voluntarily participate". I don't know how they intended to get around this one.
Thirdly, the status given to AIDS in our country is related to sexuality. People forget that AIDS can be transmitted by non-sexual means. That's why the very suggestion of mandatory testing raises eyebrows. I have met people who say they would take offence if someone asked them to get tested. As if a judgment was being made on their charitra (character) or something! A prominent social activist asked me how I would feel if somebody asked me to get tested. I told her I wouldn't mind at all. Then she asked me if I thought little children should be tested (she asked "Little children?" in a tone of incredulous disbelief). I obviously said, "Why not?"
Why do you think AIDS is not openly talked about? In recent times, thanks to the media, awareness efforts are on the rise. But it still creates more of a stir than..say.. cancer. It is because of the million other moral and social questions that it throws up. And it is because of this distorted view that the scream of AIDS that would otherwise have woken us up is silenced.
AIDS is not a morality issue. It is a medical problem. Let's look at it that way. It would help us combat the illness as well as social issues surrounding it.
Michel Foucault warned us long ago, and told us to look for value judgments in the most innocent of places. We should start by lifting the cloud of "consent" and examining the values that lie hidden beneath it.
