Sep 26, 2011

Stigma and Prejudice

AIDS.
One of those terms that instill intense fear, loathing and segregation.
A form of apartheid that continues to hold entire societies in a vice-like grip.
No longer a fatal disease, but a controllable chronic disease, our fears are largely unfounded.
Being HIV positive no longer means the individual will look languished or ooze blood or even die in a few months. (Courtesy: Philadelphia)

Although I consider myself very informed about the disease and had very little prejudice against individuals who were infected, my most recent project to The Freedom Foundation was a wonderful eye opener.
Having heard of the ground breaking work they have been doing for several decades, when I visited them the past week, I expected to see a facility that was well funded and adequately supported. But what I saw was depressing. I could not believe how a government that showers billions of dollars on CWG would not want to fund a Foundation that is serving the less fortunate in our society.

A facility that cannot be terming sprawling by any stretch of imagination, I met two dozen kids. Twelve boys and eleven girls.
One would imagine being infected with the most famous virus of the past decades, they would be sickly, coughing and without any will/dream of their own.
But on the contrary, they are very much like you and me. Very ambitious, playful, every bit intelligent and bursting with energy.
But our collective ignorance and the stigma associated with some of the ways that the virus can spread has resulted in millions being denied the care they deserve.

The youngest, Mahalakshmi, at only a shade over four years old, is already a survivor of two brain surgeries. A slow learner, the Foundation has been tutoring her so that she does not miss out on a regular school curriculum when she joins school next year. Spirited and vivacious, she is a bundle of joy.
Or take for instance, Saraswati. Shy and reticent, at 14; you'd think she is going to be depressed and suicidal. No. A creative person, she is training to be a fashion designer.

Having spent two consecutive weekends at The Freedom Foundation, I've seen how being HIV positive can be living a life where you are always judged and labelled.
But what also struck me was how ordinary they are. Off the 23 that stayed at the Foundation, nineteen of them ranged from four to ten years old.
Every bit as capricious and ambitious, we never imagined we could have as much fun as we did. Some of my team who took part in the project on Saturday, made it for the project on Sunday too!

During the course of the day, I began to feel guilty every time I remembered how sick they might be. As a person, you tend to treat people who are sick with kid gloves. You'd want to stop them from running too much, or exerting too much pressure on themselves.
But the truth is, they don't want to be treated any different from how you'd treat your kid brother/sister.
They don't want free handouts. They want opportunities.
They don't want a free meal. They need healthcare that matters. They deserve research that will guarantee a better future.
Take them seriously, but don't discriminate them.
Recognize their right to live as full a life as you or I have.
The Team that made it possible

After my visit to The Freedom Foundation, I've learned my most important lesson - AIDS is no different a disease as heart disease and diabetes.
But it's sufferers can certainly benefit a lot more from a society that is willing to understand them and their disease a little better.

I've always believed that only a less informed individual can be prejudiced. While India is the cradle of civilization, looking at the plight of individuals with HIV positive, I get the distinct feeling that we need to set our priorities right.
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