Showing posts with label HIV infected. Show all posts
Showing posts with label HIV infected. Show all posts

Monday, September 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.


Wednesday, September 21, 2011

Changing Lives.. Making a Difference

As a leader of yet another community service project, I visited an NGO that does some amazing service among the less privileged among us.

The Freedom Foundation, founded in the early '90s was born out of a need that two philanthropists, a Doctor and a De-addiction Therapist, knew existed.
Starting in a location that was way out of town at that time, the center initially treated (alcohol/drug) addicts who needed help. However, Dr Ashok Rau and Late Karl Sequeira soon realized the need for a center that would care for children who are HIV -infected.
Thus began, the current facility at Geddalahalli, roughly four kilometers from the Hennur main road.

What started with three students have now grown to over 25 children who live full-time at nine of its nicely furnished rooms.
Of course there are a lot of NGOs that do outstanding work in the field of HIV research and care, but what struck me about The Freedom Foundation was how bureaucracy and civic apathy can stunt even the most altruistic NGO.
Meeting with the director at the NGO, I could understand the pain - of not having donors, of not having sufficient funding, at fighting a loosing battle - and the determination. Take for instance, the case of two orphaned siblings. The three year old girl was HIV positive was forcefully separated from her seven year old brother, who was HIV negative. The government naturally believed the boy stood a better chance of a good life, gave him up for adoption. The Freedom Foundation, on the other hand believed that the siblings must not be separated, being as it is that the girl didn't have her parents and her brother was her only family remaining. After months of legal wrangling and much debate, the honorable courts did find sense in letting the brother be with his younger sister.

If being HIV positive was not a death sentence in itself, red tapism makes it even more exasperating.
Barred from receiving any foreign aid by archaic rules, I could feel the plight of survival.
To a government that believes being HIV positive is a punishment for your lifestyle choices, every victim is just another statistic.

I went around the in-patient facility, surveying and understanding the needs of the Foundation. Partly because I would be leading a team of 14 from my Company who will help 'Beautify the Centre' and make the day a little more joyful for the children and partly because I was moved by the plight of the Foundation that is visibly struggling.

As kids, they didn't choose to be branded, but as adults we can make sure they have a fair shot at education, a promising career and a family of their own. 
While many talk about equal opportunities, our schools, colleges and workplaces are not willing to walk the talk.
I was told how the warden and the Director had to pull strings to convince the institutions to admit the HIV -infected and -affected children to schools and colleges.
Isn't this another face of that prejudiced monster we call - Corruption?

While we are eager to spend thousands on wasteful birthday bashes, anniversary gifts and exotic vacations, what we forget to remember is how just $75 would take care of the costs of the ART for one child in a month. And it costs just $150 for an entire year's education for that child. Surely, we can afford this. Can't we?

If seeing is believing, the Freedom Foundation is indeed an eye-opener. I'd recommend you to visit them, even if you don't have any intention of serving their cause. I came away thinking of the many ways that we take our charmed lives for granted.

If you think you would like to contribute to a noble cause, please visit them here where you can contribute just about anything. 
Your change could make the difference we need.


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