The Impact of HIV/AIDS on Women and Their Families – Stories from South Asia
The two stories below are real "case studies" on the impact of HIV/AIDS on women and their families in South Asia, especially in situations of poverty. They stand in contrast to each other, one characteristic of the desperate situation facing millions of poor families when HIV/AIDS enters the home, and the other showing a glimmer of hope and a means to fight back because of a supportive family environment.
On a Footpath of Despair
Parvati and her family live in abject poverty. Her home is a 6-foot by 6-foot space, on a footpath in Kurla, Mumbai. A plastic sheet with holes in it is a makeshift roof. A few planks thrown on the pavement serve as flooring. The family's prized possessions are a few plastic buckets and broken cans of water, a few clothes, a stove and some utensils.
Both Parvati and her husband are migrants from Bihar. Parvati's parents married her off at the age of 12. A few years later, she came to Mumbai and stayed in Kurla with her husband's sister, while her husband worked as a plumber earning Rs 3,000 per month (US$67). As long as her husband was working she did not need to work and they ate well. About four years ago, however, her husband fell ill, testing positive for HIV. The little money they had was spent on doctors and medicines. Once her husband's HIV status became known, they were soon thrown out of her sister-in-law's home, and forced to live on the footpath with their 6 children, all under the age of 12.
With her husband unwell and unable to work, six children to feed and no income, they contemplated suicide. Committed Communities Development Trust (CCDT), a local organisation heard of their plight and was able to provide some help with basic rations, advice about nutrition and medication, and support for education of the children. Parvati was able to start working as a part time cleaner, cleaning floors and washing utensils and clothes, in three houses to earn about Rs 1,500.
Besides working from 9am-4pm everyday to bring in her meagre income, Parvati also has to look after her children and her ailing husband, who suffers from coughs, vomiting, diarrhoea and severe fatigue. There are days when her husband cannot get up, even to take medicine on his own. On these days, she has to take leave from work to care for him. Although he is on anti-retroviral (ARV) treatment, this does not stop the fever, vomiting and diarrhoea. To get water, Parvati and her children have to go to the chaul tap that is a 15-minute walk from their makeshift shelter. They must make 10 trips each day to get the water they need. In addition, her husband needs to be helped to the toilet which is about half a kilometre away.
Parvati and her husband went to the hospital for medication several times each month when he was first diagnosed. Each visit was expensive, even though they went to the public Baba Hospital in Kurla instead of a private hospital. Money was needed for X-rays and CD-4 tests, so Parvati had to borrow money from the people whose houses she cleaned. She sold her jewellery for Rs10,000 four years ago, when her husband first fell ill. The doctor prescribed medicines for six months, at Rs 800 per month. But they could not afford to pay for medication beyond 4 months, so it was discontinued. No other help was available in Mumbai.
In recent times, Parvati's health has begun to suffer. Her young children look after her when she's sick. She has had to cut back her cleaning work to just two houses now, earning only Rs 1,200 per month. With no other family or government support available (except for ARV medication from the public hospital), Parvati's sole hope of survival for herself and her family is the CCDT.
Family Support Shines a Light at the End of the Tunnel
In 1994, when she was just 17 and not yet out done with her studies, Fatima was married off by her family. Despite being fairly assertive in her conservative family and expressing her desire to complete her studies and graduate instead of getting married, family pressure proved too much.
A few years later, her husband began to look ill, and her family asked him to get tested for tuberculosis. He felt insulted and refused to seek any medical attention. Two years after this, her father-in- law had to be operated on for cancer and was in need of blood. As the only son, her husband was asked to give blood but he refused. Under pressure from her family members he eventually agreed, whereupon he learnt that he was HIV-positive. He chose not to inform anyone, including Fatima and both their families, and took no steps, such as using condoms, to protect his wife from infection. Instead, he tried to self-medicate, buying "medicine" from TA Majid, a famous quack in Kerala.
In 1998, Fatima's husband was tested again, and this time, the doctor told her brother-in-law that her husband had AIDS and that both she and her husband would die within two months, and indeed he did die 2 months later. Her father took her to get tested. She was tested twice within three weeks, the test positive both times. Incredibly, all this time, Fatima still had not been told that her husband had AIDS and had just died from it. She also had no clue that she was HIV-positive. Her husband had chosen not to disclose his status to anyone for fear that Fatima's parents would take her away. Instead, he allowed his family to blame her for his illness. After his death, her mother-in-law, deciding that Fatima was at fault and that she too would soon die, said that no share of the property would be given to her.
Fortunately, Fatima's father welcomed her back to his house. One day, she found her test report in her father's bag, and that was how she finally discovered that she was HIV-positive. Her initial reaction was outrage at her husband for knowingly exposing and infecting her with the virus, followed by a deep sense of despair about her future.
But Fatima's brother's wife had a friend at the Bombay Municipal Corporation, and she felt that since science had progressed so much, there had to be hope. So she persuaded Fatima to go to the BMC where she was counselled and told that with treatment she would be able to live out her life, instead of dying in a few months. She met many other HIV-positive people, one of whom was setting up a support group and asked if she would work with them. She was hesitant at first but realized that the only difference between her and the person forming the support group was their gender. "If he can live, why not me? I have to die some day. But let me try and do something constructive with my life." Earlier, the doctor had given her just a few months to live but now, with treatment it could be a few years she thought to herself.
So she asked her father if she could work with the support group. Girls typically didn't work in her home, but in view of her circumstances, her father felt that if she worked, it might help her. Less than a year after she was diagnosed, and only 2 months since knowing she was HIV-positive, Fatima joined the positive network. She was the only girl, and she was only twenty years old. Slowly, the network helped her to take charge of her life, by arming her with the information, counselling and peer support she needed to deal with her situation.
At home, her condition prompted some challenges, but her family has remained supportive throughout. At first, she was not allowed to work in the kitchen because her family was afraid she might cut her hand while working with a knife. But her father's elder brother or "tayaji" said she had to be allowed to do some work — at least knead flour or something else useful in the kitchen. Now, Fatima cooks at home and everyone in her family eats what she cooks. She also looks after her niece — no one in her family has ever said that the child should not go near her for fear of infection. The only discrimination she has suffered is from her husband's relatives. Children who had grown up with her were kept away from her after her status was known.
Today, Fatima is a confident and healthy 27-year-old woman who is a senior representative of the Positive Women's Network in Maharashtra, a grantee of UNIFEM's Trust Fund to End Violence against Women. She was encouraged to resume her studies, and is now in her final year of college and learning to work with computers. The only opportunistic infection she has had is herpes. She takes good care of her nutrition, has a very positive outlook on life and rarely falls ill. She saw the worst side of life while caring for her husband after his diagnosis. He suffered through several opportunistic infections — tuberculosis, diarrhoea, fever, weight loss and even memory loss. He had no access to anti-retroviral treatment. While he was bed-ridden she would care for him all day and all night, bathing, shaving and dressing him, and all without knowing why he was even ill in the first place. But her story has turned out well; she is one of the fortunate few. Because of her family's support, she is pursuing her education, and working through the positive network to improve the HIV/AIDS information and care services of government hospitals in her area. She can negotiate and demand facilities at government hospitals, and many of the suggestions given in the context of care needs draw on her suggestions.
These stories are from a study commissioned by UNIFEM in South Asia called "The Impact of HIV/AIDS on Women Care Givers in Situations of Poverty." The study, which was researched in India, and authored by Prof. Aasha Kapur Mehta and Ms Sreoshi Gupta from the Indian Institute of Public Administration in New Delhi, examines the impact of HIV/AIDS when it enters the home, particularly as it affects the lives and livelihoods of women care givers in situations of poverty. Focusing on existing coping mechanisms, the study draws attention to short- and long-term policy initiatives needed to reduce the burden of care. It is in the process of being published for wider dissemination and use by advocates on the issue.
(Story Date: 17 November 2005)
