Rebecca wanted to die.
She was in the last stage of HIV/AIDS. She had worked for Sahara Care Home. She knew exactly what she was going through... she knew what was to come.
"Give me an injection... please." She asked Lata and Maya. They looked into her eyes and saw their friend desperate to die. To cheat suffering of its pleasure. They could do nothing.
When they told me about her. Their tears contained their own end. Their sadness looked into mine, and their courage and strength had abandoned them, albeit fleetingly. I sat in silence with with two women that I have come to love deeply... today they leave to be with another friend and colleague, Neesha, in New Delhi. She is also in the last stage of HIV and Lata and Maya want to say goodbye.
Frustration and anger is mixed potently into their love and affection for these two friends.
"They didn't look after themselves!"
"She didn't eat right!"
"She should have taken SAM Therapy..."
"I told her!"
HIV/AIDS is not an end. These two women, along with Vaishali and Suman and some of our HIV+ clients have shown us life after HIV. But often before the AIDS gets you, the rejection weakens your resolve and you can almost see and hear and smell the virus salivate in anticipation...
STIGMA!!!
It kills! It is like another opportunistic infection that preys upon those who contract HIV. It rivals tuberculosis as an agent of death for people living with HIV/AIDS, and it also brings great suffering and pain to those affected by the virus. The child, the wife, the sister,the father, the friend, the colleague...
On Saturday last we were at Fergusson College; apparently one of the University of Pune's leading colleges. The medium of instruction is English. The dress code is hip. The language is MTV.
You would think that the majority of the students would have access to media and a culture where HIV/AIDS is not just about a red ribbon, or reduced (erroneously) to a disease that kills.
You would think!
It is a long and hard road that lies ahead of us. It twists and writhes like a snake. And the only way we can see it narrow and disappear into the distance is in our mind. Will it end? I don't have an answer. But we have to walk down that road, crawl and claw our way for Lata, for Maya and for all of us who know that stigma is cold and unfeeling, its bite can be fatal.
Errol told me today that often people in the last stage are dumped at Sahara Care Home like unwanted puppy dogs. They are to be forgotten. The family or friend or faceless one who dumps gives the wrong contact telephone number. When the person dies, there is no one to collect the body and give it a burial. On occasion when the number is correct and Errol contacts the family or friend to inform them of a death, he hears the same person who talked to him when he called to report progress say - "You've got the wrong number."
Callousness?
Stigma?
Fear?
It could be... And I know it kills. It kills the person who is infected... and I don't mean rejection this time, I mean the fear of not understanding HIV/AIDS, and so the person is convinced that he or she has contracted death. This fear is what they see reflected in the eyes of their family and their friends.
When I look into the eyes of people living with HIV/AIDS I do not see fear. They do not see fear in me. They do not see fear in my team. We learn more everyday about HIV/AIDS, and we have overcome our fear, and are helping others to do this... we have to! If we as a community do not overcome fear, then stigma remains and its shafts of hate will sink deep into those living with and affected by HIV/AIDS.
The numbers game focuses on how many people are living with HIV/AIDS...
I sometimes wonder if that is the right number...
How many people are afraid of HIV/AIDS?
How many people will stand by those infected and affected by the virus?
If we make a change with 'the fear', then we will make a change in the number of people dying of HIV/AIDS. Fear - Fear of stigma, fear of the inevitable that drives one to fatalism, and sometimes fear that leads to denial of their condition - stops people coming forward early, when with good nutrition, care and medication an HIV+ person can live what society deems a 'normal' life.
If we reduce/stop the stigma that is associated with HIV/AIDS people will be less afraid to discuss sex and sexuality in an HIV/AIDS context. They will be open to learning about safe sexual practices that will protect them. This will bring down the rates of new infections.
Am I making fucking sense? Its been a long day...
So how many people are afraid of HIV/AIDS?
People Afraid of HIV/AIDS... PAHAs!?
UNAIDS/WHO reports will never give you a statistic.
There is no range estimate... anything from 1 to 6 Billion, or however many people live on this third rock!
The fact is, if we take the range estimate for India, the numbers game falls down on its ugly impersonalness (its can be a word!). 5.2 Million Adults and Children live with HIV/AIDS in India. But it can also be anything from 2.5 - 8.5 million! Thank you UNAIDS/WHO.
Fear and stigma will never allow for accurate statistics.
We have 46 PLWHA on our project and about 100 that are directly affected by the virus.
This is the number we work with.
And now we also work with that number of PAHAs... that unknown, huge fucking number that we will never know if we reduce... except in the ones and twos and tens at most! Which for us is brilliant...
Hello?
Sorry wrong number.