Asian People’s Alliance for Combating HIV&AIDS

The staff at the blood bank where her husband's test was found positive initially refused to give the test results and sought blood samples from Gull and her two children. The subsequent tests found Gull HIV positive but fortunately her children were not affected. 'They simply handed me the results saying that my husband was going to die soon and I was also infected. They had no idea about counseling the family and gave us no information whatsoever as to how to deal with the situation. The outcome was that I took the results to the hospital staff that spent no time in shifting my husband to the worst room available; stop all treatment and started waiting for him to die. I cannot forget those days, she continued, when even the senior most doctors at the hospital would examine him while standing several feet away behind partly open door."

Although, visibly hurt by peoples attitude, Gull is quick to forgive the ignorant ones while expressing sadness at the attitude of the educated ones. "I found the illiterate much more accommodating and encouraging. I was living with illiterates and they had no idea what HIV/AIDS was, but they never behaved in the manner in which the educated, even senior doctors' did."

Gull's husband had spent several years in Kenya and had returned two-and-a-half year before his death. She is not aware how her husband got infected and doctors believe that he was the cause of her present status as an HIV positive person.

The news of death of Gull's husband also found its way to the newspapers and it further stigmatized the family. Although, the in-laws helped her financially but were always weary of using the utensil that had been used by Gull. Her brother even told her that those with HIV/AIDS are sent away from cities in the mountains to die.

The changed attitudes of the people close to Gull and the concern for the future of her two children, forced her to seek as much knowledge about the condition as possible and raise the awareness level of her family. She traveled to Rawalpindi on a number of occasions seeking information about HIV/AIDS and to learn about ways to keep her healthy.

She remembers those days when her husband passed away due to There was no place in Lahore, she says, from where I could get any information about the illness and even doctors were not aware of the factors that would result in the spread of HIV/AIDS. "Once I contacted my doctor expressing my concern regarding the spread of HIV to my children and other family members. He advised me to apply anti-septic to my hands to kill germs every time I go to the toilet and I did so for a long time."

I became an advocate for awareness about HIV/AIDS, she says, ever since I became aware of my status as an HIV positive. "I was a very shy person in the beginning and coming from a traditional Pathan family. I was not supposed to meet men or travel alone."

Following her husband's death, Gull, took things into her own hands and ran the family embroidery business for two years before adopting other means to earn her livelihood. Gull has not kept the knowledge she had gained about HIV/AIDS to herself and has actively been involved not only in raising the awareness level of others but also providing counseling services to newly diagnosed persons. "During the past few years I have seen so many places all around the country and have led awareness campaigns in Balochistan and Sindh, educating students about HIV/AIDS".

She initially became part of various groups of people who had been identified HIV positive but felt the need to go beyond simple rhetoric. "I found that many people who had brought together group of HIV/AIDS patients were simply not sincere to the cause. They were there to make money and exploit us. Thus I decided to take independent initiatives."

Gull had worked for several years with various people in Sindh and Balochistan before she decided to start working independently in Lahore about two years ago. "There was no support to the patients from the government in 1995 when I was tested HIV positive and even today they practically do nothing for us and I am one such example. I still am working on my own resources and doing what the government departments should have been doing."

She has formed two groups of HIV positive patients in Karachi and Lahore and reveals that none of the members of her groups are registered with the government or national AIDS program. "There are people in our groups and others that we have identified as HIV positive, who do not exist in the government records."

The disease has spread across the country and deep into the rural areas where people are transmitting it to their wives, producing children with illness without any knowledge. Who should be blamed? Those spreading the disease without knowledge or those who are not making the people aware? She asks. The age in which I became an HIV positive and a widow is the normal age of marriage for girls these days. The storm has arrived, would you let it spread or work to limit its damage.

She adds, "Change begins from within. I have taken a stand and my fight continues. In Asia the situation of women is deplorable; in these conditions one can imagine the situation of positive women. It is time for us to resist against patriarchy and this is time for us to take leadership and make others to learn."

Interview by: Daud