Stands for People Living with Human Immuno-deficiency.
Human Immuno-deficiency Virus is the most deadly infected virus that causes acquired immunodeficiency syndrome (AIDS), which is a condition of complete failure of human immune system.
Travelling on work, I recently met a group of PLHIV (People Living with HIV) through an Organisation working on providing Care and Support.
We met Minu (name changed) originally from Haryana. She came to this city with her husband after marriage. During her fourth pregnancy, she tested positive for HIV. In the next three years, her husband died. Two of her children have tested positive. She breaks down before she could finish what she is trying to say.
Purnima (name changed) was confirmed positive during her pregnancy. By the time she was in her seventh month, her husband died. She has one daughter. When she is talking, and I needed a translator, there was sudden unexpected laughter. Apparently, when she lived closer to the hill in a rented house, once when she was alone with her baby, a tiger entered her house. Fortunately her reflex worked and she quickly went to the other room and bolted it from inside. For two hours, they both stayed put, no ways to communicate to anyone, and then the tiger decided to leave. After that brief spell of laughter, she tells, I was not destined to die, with tears swelled eyes, she wants her daughter to study, and live. She irons clothes for a living.
Almost all of them contacted HIV from the husband. When they got married, the infection was likely in the asymptomatic phase when there are no symptoms of HIV infection. Most women were detected positive when they went for check-up during pregnancy.
Most of them paid dowry in their marriage. Their in-laws believe that it’s the woman who gave the disease to the son. There is no way to get back the money and valuables of the dowry. Most of them did now know what HIV is. Most of them were not earning.
And suddenly they find themselves affected with a disease without a cure (one can live with medication), husband, children and the entire family requiring medical attention, the man who is likely to have contacted the disease first, deteriorates fast and dies. And they are left to face an extremely hostile world.
The hospitals refuse to take up even minor surgeries for HIV infected patients and send them away in some pretext or the other, the easiest being we do not have free beds. Nobody would rent them a place to live. Nobody would give them a job. So, they hide the disease.
Like it happens, typically, when you need to use a concept quite often, you find an acronym. You find few words to explain something which would otherwise need a whole paragraph or a long conversation. Single orphan (one parent is alive), double orphan (both parents are dead), de facto orphan (one parent is alive, but is so ill, that is unable to take care of the child). These may soon become SO, DO etc, kind of neutralising the emotions to get on with the work.
Few times in life, one comes across a human institution. Completely dedicated to something that’s close to their heart and soul, so much so, that their work defines them. That institution here is a doctor. For a person infected with HIV, health is one major overwhelming concern. They need regular check-ups. Their medicines, nutrition needs to be constantly monitored.
According to the doctor (must be in his late sixties), when the patients first come to him, after being diagnosed, they ask him to give something so that they could all die. The doctor has turned his house into a centre that provides care and support for people living with HIV. His consultation room is his late father’s bedroom (that father is blessing him to no end). The neighbours grumble about the centre, he says. Imagine getting a place to do this work? Imagine a HIV patient to get a place on rent. If any of us have tried to rent a place as a single woman, or as a minority community, or as mixed marriages, or in certain cities, you would be asked if you eat non vegetarian food as a pre-condition to renting a place to live. We understand the rigmarole.
Most of the women know about the doctor and the organisation through other women with HIV and there is camaraderie that keeps them going. Some of the women have recently formed a cooperative whereby they could get a bank loan to start a home based work for a living. Ironing, stitching are some of the work they have picked up. Things that they can do individually and has less contact with the outside others.
They stand by each other rock solid. Once in a while, they go on a picnic, where they play, all of them, run, jump, laugh. And when a colleague prompts the kids to promise to her that they will study, they will play, they will be naughty and they will do whatever they want to, a spell of loud cheer resonates.
I ask the doctor, with more drugs available, how long would the children live? He says “earlier they did not survive to see the first birthday, now it is possible they live till they are 28 to 30 years old.”
A couple in the USA, both HIV infected found out about the Organisation and about a boy whose grandmother, a fish seller , after losing both her son and daughter-in-law to AIDS, made every possible effort to save the child. This couple send the boy 4000 INR every month and have made a will that when they die, the boy will inherit an amount which will see him through his medical expenses and other necessities.
The work needs money. Often times, these are projects and are supported for a period of three years (that is if one has a sympathetic funder, most often the funding tends to be for a year or two). And one is asked, “How long could you go on providing support?”
It is not a mathematical problem with a solution, the doctor says. True.
The concept of “social work” includes a very broad spectrum. It varies from charity, generosity, kindness to working on recognising Rights. The Right to live a dignified life and to die a dignified death. When one compares, it is possible that being generous is sometimes easier, as against fighting for a just and equal society.
As we were completing the meeting, one of the women gets up. Hesitantly, she waits till she could get the attention, says “we don’t care if there is no food on our plates; we want our children to go to school, to be able to study.” Tears brimming our eyes, choked for words, we nod, it is not easy, but we will all try together, that the children go to school.
The highest estimated adult HIV prevalence is found in Manipur (0.78%), followed by Andhra Pradesh (0.76%), Karnataka (0.69%) and Nagaland (0.66%) – See more at: http://www.avert.org/india-hiv-aids-statistics.htm#sthash.c0auidky.dpuf
Anuradha...the longing to find a language 