The Indian American face of AIDS

Exploring the hidden world of Indian AIDS survivors and victims

It cuts across all economic and social barriers, creating devastation, insecurity, fear and isolation. It is born and bred out of ignorance, blamed on the promiscuous and the immoral, bringing hatred, revulsion, desertion and darkness, destroying lives, families, and communities. It is relentless and does not spare anyone, men women or children. It shows no signs of abating and more often than not, its repercussions kept a closely guarded, paranoid secret.

This is the world of South Asian HIV/AIDS.

Touched by HIV

She could be anyone’s daughter, mother or sister — and she is all three. Patricia Nalls (pictured left) is an Indian woman raised in Guyana in a very conservative Indian family, who moved to the United States at 16. She rebelled against an arranged marriage, left home at 19 and met her husband Lenny Nalls, an African American, shortly thereafter. They married two years later and lived the American dream with their two kids, Alana and Shawn, both of whom attended private school.

Life was good for 10 years. Then Nalls had a third child Tiffany, who was born very sick. The doctors could not figure out the problem and Tiffany underwent 10 operations over two-and-a-half years. Around the same time, Lenny developed a persistent cough that would not go away. The physicians kept misdiagnosing his illness until he became very sick and his blood count dropped.

He was diagnosed with full-blown AIDS in October 1986, the consequence of drug use and sharing of needles while serving in Vietnam. Lenny died three months later and their daughter soon after.

“I was 29. I got tested right away and had my children tested. My children were fine, but I had full-blown AIDS. They told me I had less than two years to live.”

Nalls had hidden her husband’s disease, calling it TB, from her family until he lay on his deathbed. Her family rallied around her and since she knew she was going to die, she started putting her affairs in order, made her funeral arrangements, and tried to educate herself about the disease.

Seventeen years later, she says: “I think it was the sight of my 8-year-old daughter and my 4-year-old son looking at me with such fear that they would be orphans that gave me the will to live. Otherwise I had deteriorated to a mere 80 pounds,” she says.

Ajay (name changed to protect identity) is the epitome of what the stereotypical well-raised, successful Indian son would be. An educated and handsome entrepreneur, Ajay came to the United States at age four in 1973 and grew up in Massachusetts.

In college, Ajay fell in love with a man who was previously married and 15 years older. They were together for eight years, and became business partners. In 1993, his partner who was diabetic was diagnosed with AIDS. Ajay says, “We never did anything outrageous and were more like an old married couple. Jim (name changed) had juvenile diabetes and had to take insulin shots twice a day and I used to monitor that. I suspect that I got HIV through a needle while testing his blood sugar. He had been married previously and had a child and I never thought he was promiscuous before he met me, but evidently, he was. When I found out, he was positive; I was very supportive and took care of him and the business.”

Ajay knew he was at risk, but put aside his own well being to take care of his partner. Toward the end, in 1994, he took time off to go to India and returned to find that his partner’s family had moved him from the hospital and did not want Ajay around. He learned about Jim’s death through an announcement in the obituary section.

“It was extremely difficult but I somehow got through that, but then suddenly I started getting sick and I went and got tested and found out I had full blown AIDS. It was a shock. I told my parents, but I was too sick for anything to register at that point. I had several infections and could barely walk.”

Marlon Wallen, an Indian born in Trinidad, had a rough life, having been sexually molested and raped as a youngster before he left for United States at the age of 17. He came to New York where his father lived with his second wife.

In 1990, when he was just 19, he fell very sick. “I never had that kind of fever before and though I was not very well informed about HIV, I just went on instinct and got myself tested.”

Wallen fully expected the test to come back negative. “The man on duty at the clinic said to me very matter-of-factly, ‘No actually it came back positive and if you need any information just ask the nurse on your way out.’ So much for sensitivity training! I was totally numb and rode the subway for hours.”

Wallen had no family support and decided to leave New York and move to Massachusetts, where he has lived ever since.

“Finding out I was HIV positive was a really heart-breaking moment for me. I knew at that point that I could not go back home to my country, because Trinidad did not have the medical facilities then for people with HIV and they do not have them to this day. To survive, I had to stay here and make it work.”

Gaurav (name changed to protect identity) was born and brought up in India and came to the United States for graduate work. While studying at an Ivy League university he found himself feeling weak, but attributed it to exhaustion from the work on his dissertation. When he developed a low-grade fever, his doctor ordered a blood test and saw a very high level of protein in his blood, which is one of the symptoms of HIV.

“By December 1992, I came down with full-blown AIDS,” says Gaurav. “It shattered everything. I had planned to file for immigration, but everything was put on hold. If it had been cancer I could have still got my immigration, but since 1984, a law had been passed and if one had AIDS one was legally denied immigration.”

Gaurav recalls being in a state of shock, but had to get back to work and kept going through the motions in a numb state.

“The only person I told was my aunt, who had been quite concerned about my health and dealt with it with great kindness. My illness had a devastating effect on everybody. After I found out my aunt went to my uncle, a prominent South Asian, and asked for his advice and he conveyed the news to my parents. He did help me in terms of getting good doctors.”

Devan Nambiar grew up in Malaysia and after finishing high school moved to Canada for further studies. He fell in love with an Indian man who was visiting from the United States and was planning to move to America when a phone call to his friend’s house changed everything.

“His brother in law told me he was in the hospital with an AIDS related infection. He had known all along he was HIV positive. I hung up the phone and wondered why he not told me. You trust people and don’t really ask for their medical record, especially in the 1980s, but I should have known better since I was doing AIDS counseling.”

Devan tested positive as well in the summer of 1988.

“When I went for my test, I was very sure it would come up negative. I thought I am a good person this will not happen to me. When it did, I walked out in a daze. It hit me so hard that I was numb and didn’t know if I should laugh or cry, and the question of how do I tell my family kept haunting me.” Devan finally told his sisters, but not his parents. Since he did not develop the typical symptoms, he thought the test might have been a false positive. He stayed celibate for two years and took the test again, but it came back positive a second time. He realized it was time for total acceptance.

Devan fell in love with Chris, a good friend, who was also HIV positive. Chris died a few years later at 27. “I have done volunteer work with AIDS patients but to see your partner so sick and so dependent was heart wrenching. He had diarrhea 15-20 times a day, could not hold any food, and weighed a mere 80 pound, all bones in the end. He had tubes in him everywhere and the only thing recognizable was his incredible smile.”

Aman (name changed to protect identity), a South Asian heterosexual married man, who came to the United States in the mid 1990s, to earn a living and support his family back home, found out he had AIDS in 1996, possibly through a prostitute in the Middle East. His wife tested negative. He had no family in the United States and the only support he received was from a South Asian organization dealing with social issues.

Volunteers from the organization fed, entertained and watched over him as he grew progressively sicker. He did not want his family to know about his illness.

Aman, who had agreed to be interviewed for this story, took a turn for the worse and died surrounded by volunteers, without his family by his side, a few weeks ago, wanting badly to live. Before he died, he asked that his body be shipped back to his country. The volunteers at the organization worked round the clock seeking the help of his country’s embassy, whose top official compassionately bent rules to have a body with a contagious disease shipped home via its national air carrier.

The death certificate does not say Aman died of AIDS, but of other diseases related to the virus. His family received his body and buried it never knowing just how lonely and painful his dying existence had been, but for the presence of the kind volunteers. At his request, they will never know the cause of his death; they were told he died of cancer.

Coping

As Nalls, Wallen, Nambiar, Ajay and Gaurav tried to come to terms with the reality of their disease, they confronted many dilemmas. How to stay healthy? How to find resources and help? And, of course, what about the South Asian community, the model minority that shoves anything remotely controversial under the carpet and views HIV a consequence of immorality and promiscuous behavior? Nalls says it was only when she became sick that she went on disability and finally started the medical treatment that eventually prolonged her life. But she kept her condition hidden from everyone for three long years before coming out of her self-imposed isolation. The drug AZT had just come out and it worked well for Nalls. Today she is still alive almost 17 years later.

The first time she ventured into a support group she found herself the only woman surrounded by gay men. Their issues were very different. “They were talking about living it up and enjoying life. I was panicking about my kids and how to put things in order.” Nalls was surprised not to find any HIV positive women and decided to post flyers in her doctor’s office and installed a secret telephone in her house for other HIV positive women to reach her.

Soon other women began calling and they formed a network to support each other, whether it was handling bad news about their health together, or taking care of each other’s children, going to doctor’s appointments together, finding food and other resources. “I also found that the reason services for women were not available was because the people at the helm were guys. So I joined a planning council and was able to raise issues affecting women with HIV.”

Today Nalls heads a non profit organization she founded in 1997 called The Women’s Collective in Washington D.C. for women with HIV/AIDS, helping them cope with the disease and also doing preventive outreach work to stop the spread of AIDS.

Nalls says: “AIDS is no longer a death sentence. There are a lot of medicines that really do work and they have helped me, but we women have to get out and be tested and know our status and we must get out early to get immediate help and treatment. Don’t wait till you give birth or get really sick because by then your bodies are already too weak and it’s harder and there are more side effects.” She says she is amazed at her own strength, how she has pulled through it and at the totally new persona that has emerged from within her. “I didn’t even know how to drive when my husband was alive. I guess when adversity strikes we women just dig our heels in and do what we have to do.”

Ajay too started by taking AZT, but became anemic as a result. Later he started on new protease inhibitors. “That literally saved my life. Prior to that I had been told I had only 12 to 18 months to live.”

Ajay has been on the regimen for several years and says his virus is virtually undetectable, but there have been side effects. He has high cholesterol and the fat redistribution on his face has given him a huge double chin.

“Some people develop skinny legs, but a pot belly, a buffalo hump or a double chin as a side effect. I have had plastic surgery done to remove it. I still need more surgery. I exercise regularly and am in very good shape and yet it is difficult to go to a South Asian get-together and not feel self-conscious, because I feel disfigured.”

Ajay adds that when he first found out he had AIDS he decided to live day to day. “I spent a lot of money and traveled, but when I realized I was not going to die in those 12-18 months, I reinvented myself.”

Ajay quit his antique business, got into computer industry and did very well working long hours and not feeling any fatigue. He is now planning to start a new business.

His parents initially kept his illness secret and he is still not out to the South Asian community in his area, but today things are working well for him.

“My parents do worry but they don’t directly address the issue. My cousins do not picture me as having AIDS or being sick, because I am very active and I do not use my disease to get attention or special treatment. I am not on disability. My brother is 11 years younger, but is very supportive.

“When I first tested positive I wished to just live long enough to see him graduating through high school. Today my brother has graduated from Harvard and is going back to med school next year and I hope he will get married and settled and then finally I can say that if anything happens to me my brother is there to take care of my parents and they are going to be okay. Being the older son is a thought that never leaves me and I feel very responsible and have been sacrificing a lot for my family. I live at home and take care of my parents.

“I feel I lost several years because of this set back and so I want to race ahead. I told my relatives and friends a little over two years ago, and today I don’t have to go around sneaking to take my pills. I feel secure with family and that has changed my perspective and given me the hope and ambition to do well. I think when people find out you are HIV positive they automatically presume you are either promiscuous or a drug addict. I think to me it doesn’t matter how you get it; the important thing is to deal with it with strength and courage and positivism.

“Another thing that was long overdue and is now being addressed only recently is the campaign in positive prevention. So far, there was this presumption that you will never have sex or indulge in risky behaviors if you have been diagnosed with having HIV, which is so untrue. After all the new people that are testing positive are getting infected from people who are positive.”

While Ajay has done well both in the kind of support he received from his family with relatively few side effects, Gaurav has had a much harder time. Gaurav too took AZT for starters, but experienced severe side effects and came down with AIDS related dementia, cancer and depression.

His father had retired and settled in Kolkata, but his parents could not enjoy their retirement for long. “They came here and the next few years were spent taking care of me and I think it is because of them I survived. I couldn’t remember things and in 1995, at age 32, I had become a child. My parents tended to me even putting diapers on me as I had lost control of my bodily functions. In 1998, I came down with cancer and they had to remove my lower colon. My father had passed away, but my mother was here through my ordeal, an 8-hour operation. I think AIDS aged my parents considerably.”

It was when his sister, who was in a college in the south, asked them to bring him there, not knowing that one of the best centers for AIDS research was in that town, that things changed. The clinic stopped his AZT regimen and started him on another drug, which did not have the same side effects and literally saved his life. Today Gaurav lives in that town, tutoring on the side, and says it took him quite a while to work through the anger and the stress.

“If you have cancer, you have people’s sympathy and the sympathy of the system. But AIDS is a different matter, because AIDS is considered your own doing. Because of the disease, they could not do anything about my immigration. Today I am jobless, and because of my health, doctors advised me not to work. I live here because of the medical facilities instead of moving to India.” Gaurav adds that the only recourse left for him is to seek asylum. “It’s not only the burden of the disease, but also the burden of keeping it hidden that takes its toll. Once I had cancer, it was easier for me to say I have cancer than say I have AIDS.”

Gaurav says it’s easier to interact with the younger generation who is accepting and open-minded. He does not talk of his disease with the older South Asians but thinks some of them are intelligent enough to know.

Wallen, who has lived with AIDS for over a decade now, had a healthy lifestyle to begin with and fortunately, his strain of HIV, is not as severe as some others.

“I guess it also depends on one’s metabolism and I have learnt what medications work or do not work for me and I have an excellent physician. Not all doctors are very knowledgeable about AIDS and it is so important to check references. That could very well be the difference between life and death.”

Nambiar too had a healthy life style and has been practicing yoga for over 20 years. He has lived with HIV for nearly 14 years and says he also takes ayurvedic medicine along with the allopathic cocktail of HIV drugs. Nambiar says all allopathic drugs have severe side effects, ranging from nausea and diarrhea to fatigue. HIV affects the gastrointestinal tract the most and then goes on to affect the lymph nodes, seminal fluids, the central nervous system and the brain.

“I cannot emphasize the need for exercise, lowering your stress level and good nutrition enough. I attribute my health to that and a balanced, stress free life style.”

Both Nambiar and Wallen have participated in clinical trials. Nalls says she was denied acceptance in one mainly because she was a woman and they were afraid she might get pregnant and turned her down even when she said she was ready to sign a commitment promising she would not get pregnant.

As for the South Asian community, Wallen says his own experience has been mixed. There is considerable ignorance about the disease among people in spite of their education. He once kissed the son of a friend and his wife ran with the child to wash his face with soap even though her husband is a physician.

“I think I see a lot of people who have HIV positive members in their family and they choose to hide it. Indian families are so into status quo and creating an impression. If their daughter is dating some one from a different race or culture, they don’t want to talk about it. She may buy some thing at a bargain and they don’t want others to know that she shops cheaply. Just because I have, HIV does not make me a bad person. Like every body else I have the same concerns of safety health and education. My dimension of family may be different, but in today’s world who is to say what is normal any more. People function in a bubble and they cannot comprehend what they don’t know and what they suffer from is fear of the unknown.”

Nambiar says he found a holier-than-thou attitude rampant amongst other South Asians, and when his partner died except for one person, none of his South Asian friends showed up for his funeral.

“An NRI from Hyderabad who contracted the virus in India and who I helped, committed suicide because he did not know how to tell his family. More than HIV, it’s the shame and the stigma that kills you. Everyone is so closeted and while I am very open about my status and have done TV shows to bring awareness, I look around me and wonder how many of these South Asians are positive and suffering in silence?”

Nambiar has done extensive work in the area of HIV/AIDS both in Canada and India and says many women infected by their husbands face the brunt of the stigma. He spent almost five years at the Tamabaram Hospital in Chennai (which was visited last year by Bill Gates and will be receiving part of his $100 million donation for AIDS prevention and care) providing funds, medication, food and clothing, and also helping build a shelter for families of AIDS patients to stay and cook while tendering to their loved one. Nambiar says if the disease is not contained in India, it will come back and haunt the South Asian community in the United States through NRIs who go to visit their homeland and return infected and pass the infection to their partners.

Trials and Triumphs

The key issues within the South Asian community are the stigma and ignorance about the transmission of disease, according to many AIDS activists and experts who have studied the subject.

Javid Syed, a Community Planning Trainer for the Asian Pacific Islander Wellness Center in San Francisco, which offers HIV/AIDS education, support and prevention services, recalls the case of a client from Bombay who came to the United States and stayed on partly because he was gay. When he finally came out to his family he could not tell them he was HIV positive, even though he was living with his sister and her husband. It was only when he was on his deathbed at the hospital that his sister found out and wished she had known earlier.

“As South Asians we proudly promote our community as being so family oriented and close knit and a safe haven and here is someone who is living with family and could only tell of his status on his death bed.”

Syed also recounts the case of a woman who goes to the temple five times a day and has won awards in scripture classes. She has no immediate family and came here as an undocumented immigrant. Her husband died of AIDS and her kids are in India. After the 1996 immigration reform, her legal status is precarious.

“The good thing is that there are people around to give her access to the bare minimum: food medicine, shelter and to speak to her in Gujarati. She has a lot of faith in spirituality and still she cannot trust her community with something she really needs a lot of support for. The care she receives could not have been possible 10 years ago, but people are still living lives that are filled with sadness and loneliness.”

Syed says the man from Bombay had heard about HIV/AIDS, but did not know South Asians could also get it. “Even in New York University when we were invited to do a workshop with the South Asian Students Association we were told not to bring in condoms because South Asians don’t have sex. It’s really the kind of resistance we have in our community about acknowledging issues of sexuality that makes our work so hard. But what we found useful was to connect the HIV/ AIDS stuff happening in South Asia to educate people on the HIV/AIDS issue in this country, since they are always concerned about what is happening in India and we used that to tell them that though we live miles away we are still connected to our country and what is happening there can happen here to us as well.”

Syed adds “The issues that lead our community to get infected seem to be deeper and run longer. If we were able to have conversations about sexuality in a way that was more loving and caring within our community it would aid our work in HIV/AIDS tremendously, but there is still so much resistance from certain pockets.”

During outreach work with the cabbies outside clubs waiting to pick up their fares, Syed said many cabbies disclosed having sex with sex workers and even with people hailing their cabs. “Any community is sexually diverse and active, but a community that is estranged or far removed from their own family and have economic and other pressures is also ripe for these kinds of sexual acts. We found the South Asian community is incredibly sexually active and has no access to information and services that seems to speak to their experiences and so it was important to address that. The language and culture aspects were very important and starting a dialogue was more important than just handing them a condom and being done with it. Building trust with people was very important, as we realized what it takes to win the confidence of the community.”

Syed says he has seen all sorts of people, from blue-collar workers to highly professional people, afflicted by the virus. The disease spares no one.

Family support is not always forthcoming, even for some families for whom HIV/ AIDS is less of an issue than taking care of the infected family member. Family reaction is especially cold if the HIV infected person is gay or bisexual or lesbian. Then their sexuality is blamed for the disease. Many in the community also automatically presume that a gay person is HIV positive as well.

Syed thinks as far as HIV prevention issues go, as the subject takes center stage in South Asia, it will become easier to have similar conversations in the United States. “Even after people know it might be possible theoretically, it often does not bring home the point that they should use protection in sex. They are more conscious of getting sexually transmitted diseases from a sex worker, but less conscious of contracting it from their partners. I see that for a lot of sexually active people, their knowledge of HIV/AIDS does not translate into practicing safe sex with people whose HIV status they don’t know.”

Gurpreet Clair, women’s project coordinator at the Asian Pacific Islander Coalition on HIV/AIDS, who has worked extensively on women’s projects, especially among immigrant South Asian women, says that domestic violence and women’s reproductive health are tied up with HIV/AIDS. Many women who test positive are in their 30s and 40s and have been infected by their partners. They are usually homemakers and not in a position of power to make decisions about their well-being.

While many second-generation women are well informed, they often have no idea what their partners are up to and the narrow-mindedness of the community is frustrating. “Compared to all the Asian communities we work with, the South Asians are the hardest to get through to and particularly the Indians. We have gotten through to the Bengali Muslim and the Pakistani communities, but the Indian community is the hardest to get through and they are so class and religion conscious, they think it will happen to someone with another religion and so they don’t want to learn anything about it.”

Syed adds that for many women who came forward their paramount concern if often how their situation would affect their children and husband, even if the husband was already positive. In every South Asian family, women in general take care of everyone else before taking care of themselves.

Now a national network of Asian Pacific Islander women is organizing conferences on HIV/AIDS issues and several staffers on various HIV organizations are women, which has been beneficial.

“Still there is a lot that needs to improve where a woman can walk in a feel all of her issues are being covered, from HIV to the entire family issues,” according to Syed .

Subha Raghvan, assistant professor of medicine at Columbia University and an expert on nutrition, says many infected people may not have insurance and so even though they may have had unprotected sex, they do not come for testing until they fall sick.

Raghvan says: “The AIDS epidemic in India will affect the NRIs here. The world is becoming small and global in many ways. I come from Andhra Pradesh and multi partner sex is very common there and today there is such a high prevalence of HIV that Andhra Pradesh may become our Africa very soon and a lot of people are migrating from there to here and that itself is going to create problems. HIV is a pleasure issue and not a moral issue.” Raghvan adds that many gay South Asian men who have sex with men are married, have a family life for financial and social acceptability, yet continue to have sex with men.

“The acceptance of homosexuality is still difficult. I have so many cases of people here who are bisexual and will never come out. We have more support for HIV positive people in India than we have for HIV positive people here.”

Raghvan adds that the older generation remains in denial and if they do not confront facts, their children will indulge in high-risk behaviors like unsafe sex, drug and alcohol use.

“We rate our children on the basis of their career choices, we never gauge them intellectually or emotionally. Life is not just academic accomplishment.”

Raghvan says although considerable information on HIV is available in this country, the vast majority of community members refuse to pay attention thinking the community is not at risk. “I think people in India are much more educated about HIV in South Asia than South Asians living here.”

Ramani Sripada Vaz, director of programs at the Massachusetts Asian Aids Prevention Project, who has worked extensively with the youth, concurs that many people have misconceptions around sex and sexuality because either they are young or from communities that don’t talk about sex and sexuality.

“A lot of people have a misconception that only gay white men get HIV and that you also have to be older to be infected, because that is what you saw in the media, until Magic Johnson came out. They really were not clear how it gets transmitted and how to protect themselves.”

Vaz adds that working with the South Asian community; she discovered they didn’t think that the public heath messages applied to them, that as long as they stay within their community they are not going to get it. She has seen college students say, “Oh I had unprotected sex but that person cannot have it. Did they know the person’s status? No, they didn’t ask.”

Vaz says she prefers to focus not on the older generation, but the young who are putting themselves at risk. She adds that people who are gay are not just going to have sex with men. Some have sex with women.

“Then there are married men with kids who have sex with men. There is an area of anonymous sex in Boston and you will see cars parked with baby seats and men having anonymous sex with men. They are more likely to have unprotected sex, because the gay man is at least having public health messages directed at him to use condoms, but these married men fool themselves by thinking ‘Oh, I have nothing to worry, I’m not gay.’ We have so many new arrivals along the South Asian community and what really fascinates me is that a lot of these new arrivals don’t even know English but they know where anonymous sex sites are.

“The Internet too has opened doors for a lot of people who are not gay identified, who behaviorally might be having sex with men and get away because they hook up online and it’s all anonymous. Our community is so not ready and they don’t want to hear the fact that if it is not your partner cruising outside, it could be your brother. They are more concerned about looking good in the eyes of the community. If their kids choose anything other than medicine, engineering or law they can’t deal with that. Imagine the chaos if their kid turns up HIV positive.”

Vaz says the number of women who are contracting AIDS has grown dramatically and almost 30 percent are unaware of their HIV risk.

“When I went in for my pregnancy check up, they routinely have to check you for HIV, but I was told, ‘Oh, you are not dealing with HIV since you are South Asian.’ I know AIDS educators that get infected. How many people outside the hospital are smoking who know the dangers and yet they do it?

“I think we need to be aware there are people in our community who are affluent, have power and may even be community leaders, but they may also be HIV positive. You are not immune just because you are successful. The degrees and salaries is all an illusion.”

Khurram Hassan, the newly elected President of Raksha a non-profit social services organization in Atlanta which handles HIV/AIDS cases among South Asians, says in his experience working on HIV/AIDS cases for close to a decade, he has seen HIV transmission in the immigrant community mostly through heterosexual sex. He adds that while most among the younger generation are well informed and careful, a segment of the community is promiscuous because they are trying to fit in. Some South Asian girls feel inferior, because they are not the ideal American blonde white girls, and craving personal attention and approval do desperate things.

Those who have recently arrived from India often do not understand the lifestyle and have a stereotypical idea that sex is readily available, American women easily available and often they too are ignorant about public health resources. Another group of successful professionals or business people, here without family, sometimes turn to prostitutes. They do not use protection and think since they are not gay they won’t get HIV.

“Then there are some immigrants who work long hours for very little money, are desperately lonely and go to prostitutes,” says Hassan. “As a community we must stop being so reactionary and putting things under the rug, because there are other reasons for getting HIV than being promiscuous. Sometimes people do drugs or have a sexual encounter, because they were lonely or abused and not because they are wild or promiscuous. Ninety percent of the time sex is not about pleasure; it’s about power and abuse of power. A lot of folks having HIV are both women and men who are vulnerable. Not everyone can be smart enough to figure out they are being used. Many people have weak personalities and end up being manipulated without realizing what is happening. There isn’t enough data, but incest is a huge problem in our community and you are going to find some young girls and boys being infected by uncles and older men because women in general are not sexual predators and according to statistics, 95-98 percent of sexual predators are straight men.”

Ifti Nasim, a high profile Pakistani gay poet in Chicago, recalls losing many friends in the South Asian community to AIDS since the late 1970s. In one instance, he says, one of his friends was confined to a room by his family watching Hindi movies all day long and died without interacting with anyone. Another friend died with his wife and lover in the same room hovering over him.

Nasim says: “I give lectures on practicing safe sex and the importance of using protection. As a Muslim, I thought Muslims will be very conservative, but when I started lecturing, I found the Hindus and Sikhs to be as close-minded. They don’t talk about sexuality with their children. Therefore, there is no dialogue and they are in denial and if you say your son is gay don’t marry him off, they get angry. It’s horrifying to see our community not moving with the times.”

Adds Syed: “The positive development is that when I started there were a handful of people doing this work. Now there are a lot more people that are involved and resources that are available. The new challenge now is that with the medical treatment, available HIV is no longer a death sentence, but seen as a chronic illness and it seems to have made some sections of society complacent about practicing safe sex. Then there is racial inequity that denies us the resources to give help, to give out the information that our community needs and then once that information is available it is fraught with sexism, issues around different linguistic communities, homophobia.”

To address the paucity of South Asian HIV/AIDS programs in United States currently, the National South Asian HIV/AIDS Network (NSAHAN) was established two years ago. The network has increased awareness within the community and the media and developed exclusive programming for South Asians. Several South Asian organizations dealing with domestic violence and other family issues are beginning to handle HIV cases as well.

Syed says: “I think as long as there is sexism and homophobia in our community it will be a struggle, but it does not mean it’s impossible. What is heartening is that just as there is a lot of fear and ignorance there is also a lot of compassion and people really are incredibly thoughtful in supporting each other. A lot of times, our clients tell us it’s not HIV, but what’s killing me is the isolation from the community. Therefore, everyone can make a difference by being more educated and hopefully these kinds of stories will open up our hearts and minds as a community.”