Breakthrough for HIV+ women in Punjab: a self-help group

We’ve discussed AIDS in Punjab and its impact on women before. An impressive and inspiring update has since takenAids_virus.jpg place.

…a small group of HIV positive widows from rural Punjab has taken to a path that may prove to be a major initiative in making people living with HIV/AIDS self-reliant…

12 women in Anandpur Sahib have created a self-help group.

We look at the formation of this self-help group as a rebirth. Our group wants to be financially self-reliant so that we can tell our relatives that we are no longer at the mercy or doles of relations for travel to a medical centres or to buy emergency drugs, says Avtar Kaur, democratically elected president of the Bhai Ghania Self-Help Group.

The group is being assisted, interestingly, by Ambuja- a cement company responding to the alarming rates of infection of its truckers. The company has teamed up with the International Finance Corporation, a branch of the World Bank, to “proactively prevent and manage HIV/AIDS from affecting the Ambuja communities in eight manufacturing locations of the company across India.”

hiv_self_help_group.jpg

Counseled by a local NGO, Ambuja Foundation, these 12 initial members will save Rs 50 each for three months. Out of the Rs 1,800 thus collected, they will open a bank account with Rs 500 and keep the remaining Rs 1,300 to be loaned to members at a nominal interest of 2 per cent. Hopefully this amount will grow as more people join the group, says group member Satinder.

The goals of the IFC-Ambuja HIV/AIDS project are to increase knowledge of prevention, transmission and treatment; increase skills in prevention and treatment; increase motivation to prevent and seek treatment; increase service provision; and decrease barriers to preventative methods, discussion, and treatment.

Traditional support groups like family and friends are wonderful for day to day difficulties. But some monumental challenges, like living with HIV in a country rife with misinformation and false notions of the disease, sometimes require stepping outside these traditional support groups and seeking additional help.

The self-help group not only aims at providing financial support to its members, but also acting as an extended family. After my husbands death, my father-in-law tried to rape me. When I resisted I was thrown out of the house. For many months I was not allowed to meet my children. Only recently, this group of HIV positive people accompanied me to my in-laws and confronted them. Seeing so many people come to my support, my children were allowed to come with me, says Harbans Kaur (name changed) of Heerpur village. The group gives each other moral support besides making others feel cared and wanted in the absence of their own families abandoning them because of prevailing myths about HIV/AIDS. The network includes two married couples, whose marriages were on the rocks after one spouse discovered that the other was not only infected, but had passed on the virus to them. But, with counselling and support, they have decided to face the odds together.

The number of women in this group – 12 – is small. But this first step is the most difficult to make. This is the first self-help group for HIV + widows I’ve heard of. It’s often easy to think that if something isn’t already being done, then it must be too difficult, which these women have shown is simply not the case. But the stigma of HIV/AIDS has prevented many people from speaking out publicly about the disease.

In India, as elsewhere, AIDS is often seen as someone elses problem as something that affects people living on the margins of society, whose lifestyles are considered immoral. Even as it moves into the general population, the HIV epidemic is misunderstood and stigmatised among the Indian public. People living with HIV have faced violent attacks; been rejected by families, spouses and communities; been refused medical treatment; and even, in some reported cases, denied the last rites before they die.

These women are courageous for having the strength to create what was previously unavailable, for working towards becoming self-reliant. They truly deserve to be celebrated. I hope their self-help group will be a model or inspiration for many others.
Ambuja may not be the first, and it certainly won’t be the last industry to respond to the HIV/AIDS crisis in India. I suspect that many industries who employ large numbers of truckers will be responding in the upcoming years. Their support and involvement in prevention, education, and advocacy is essential.

Are there concerns about methods or conflicts of interest that should be addressed to maximize the benefit of industries’ involvement? What, if anything, should be expected from industries responding to large numbers of their employees becoming infected with HIV/AIDS? Or is this simply a win-win situation where any help is better than none at all?


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23 Responses to “Breakthrough for HIV+ women in Punjab: a self-help group”

  1. Harry834 says:

    Hello. I'm Sri Lankan. I just wanted to say that I'm proud of these women for creating this group.

  2. Harry834 says:

    Hello. I’m Sri Lankan. I just wanted to say that I’m proud of these women for creating this group.

  3. Reema says:

    Thanks for sharing your sentiment Harry :)

  4. Reema says:

    Thanks for sharing your sentiment Harry :)

  5. Harry834 says:

    Your most welcome. Feel free to check out my blog anytime. Link is on my name.

  6. Harry834 says:

    Your most welcome. Feel free to check out my blog anytime. Link is on my name.

  7. alvindarjit says:

    It's sad how women became the victims. Most of the womens contracted the disease from their husband, who during their truck-driving journeys have contracted them from prostitutes, but its's just painfull to imagine what these women are going through.

    It's a well known fact that women are ill teated in India, contracting HIV adds up to their burden. And it's just amazing to know that some people do care, some people do want to make a difference. May God bless and guide these people.

    Gurfateh.

  8. alvindarjit says:

    It’s sad how women became the victims. Most of the womens contracted the disease from their husband, who during their truck-driving journeys have contracted them from prostitutes, but its’s just painfull to imagine what these women are going through.

    It’s a well known fact that women are ill teated in India, contracting HIV adds up to their burden. And it’s just amazing to know that some people do care, some people do want to make a difference. May God bless and guide these people.

    Gurfateh.

  9. Ruby says:

    "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has" -Margaret Mead

    Though this is a small effort, I am very proud of these strong and courageous women for taking the first steps!

  10. Ruby says:

    “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has” -Margaret Mead

    Though this is a small effort, I am very proud of these strong and courageous women for taking the first steps!

  11. kprincess says:

    way to go ladies!!! I agree that the women in India have been oppressed, but it's nice to see that there are women who are actually standing up and doing something about their situation.

    Most of the women there will fast, go to fake sadus & fortune tellers, and other stuff rather than actually look at their situation and address the problem w/ a real solution. I mean, maybe it's because that's how they've been brought up, and that's all they know. But it's kinda sad that Sikhi liberates us, but as women we haven't chosen to take it up. Instead we follow the culture that only tears us apart.

    but nice to see that they're breaking away.

  12. kprincess says:

    way to go ladies!!! I agree that the women in India have been oppressed, but it’s nice to see that there are women who are actually standing up and doing something about their situation.

    Most of the women there will fast, go to fake sadus & fortune tellers, and other stuff rather than actually look at their situation and address the problem w/ a real solution. I mean, maybe it’s because that’s how they’ve been brought up, and that’s all they know. But it’s kinda sad that Sikhi liberates us, but as women we haven’t chosen to take it up. Instead we follow the culture that only tears us apart.

    but nice to see that they’re breaking away.

  13. kprincess says:

    maybe the punjabi singer should write songs about the increase of HIV/AIDS among the truckers, since they love writing trucking songs

  14. kprincess says:

    maybe the punjabi singer should write songs about the increase of HIV/AIDS among the truckers, since they love writing trucking songs

  15. Phulkari says:

    Reema, thank you for your post! :)

    It's great to see that some type of help and support is being provided to these women and their families in Punjab. Here is an example where talk becomes social action!

  16. Phulkari says:

    Reema, thank you for your post! :)

    It’s great to see that some type of help and support is being provided to these women and their families in Punjab. Here is an example where talk becomes social action!

  17. Camille says:

    This is such a great post, and it made me think of other women facing similar issues in other countries. I used to live in a border town in Kenya where HIV+ women had similar challenges. Most were divided into two groups: those who had contracted HIV from their husbands (who may be truckers, military, have multiple wives, engage in riskier sex practices), and those who were sex workers. In both cases, women were faced with high economic insecurity/risk that was then compounded by their health risks. The creation of self-help groups, especially to poor resources (money, child-care, support), is fascinating and really inverts the "victimizing" frameworks we use to discuss women faced with HIV/AIDS.

    I'm excited, and I wonder if these women will be able to help other women in other regions create supportive models as well.

  18. Camille says:

    This is such a great post, and it made me think of other women facing similar issues in other countries. I used to live in a border town in Kenya where HIV+ women had similar challenges. Most were divided into two groups: those who had contracted HIV from their husbands (who may be truckers, military, have multiple wives, engage in riskier sex practices), and those who were sex workers. In both cases, women were faced with high economic insecurity/risk that was then compounded by their health risks. The creation of self-help groups, especially to poor resources (money, child-care, support), is fascinating and really inverts the “victimizing” frameworks we use to discuss women faced with HIV/AIDS.

    I’m excited, and I wonder if these women will be able to help other women in other regions create supportive models as well.

  19. pk says:

    While it is important we laud initiatives which seek to meet the needs of the most disenfranchised, I am worried about the intentions of this organization's work. I have gone to Punjab and studied the HIV epidemic there, and have done HIV work in other parts of India, and elsewhere in the world, and I must say, that because of the very harsh stigma associated with the infection, the ethical code of NGO's devoted to working for women affected by HIV often cements them from using photographs of people affected by HIV for publicity.

    I worked with members of a Punjab based NGO working on HIV issues, and even in the very urban context of that locale, even the most vocal, most-autonomously self-directed, most brave person affected by HIV (a woman!) did not want their photo taken for any public displays. Their families especially were most protective of their right not to be objectified.

    In the context of NGO's in India, it is very often the case that people from outside not directly affected (at their best, do-gooders, at their worst fame-seekers) use the stories and bodies of the dispossessed to sustain their own work and own agencies, sometimes even with the jargon of "self-help". Without negating what may be good intentioned efforts of the Ambuja initiative, I am worried that given this context, the people used in this photo may not have given full informed consent of the public and publicized use of their images as women affected by HIV. The repercussions for affected individuals can be very very bitter; it is paramount to tread lightly and respectfully.

  20. pk says:

    While it is important we laud initiatives which seek to meet the needs of the most disenfranchised, I am worried about the intentions of this organization’s work. I have gone to Punjab and studied the HIV epidemic there, and have done HIV work in other parts of India, and elsewhere in the world, and I must say, that because of the very harsh stigma associated with the infection, the ethical code of NGO’s devoted to working for women affected by HIV often cements them from using photographs of people affected by HIV for publicity.

    I worked with members of a Punjab based NGO working on HIV issues, and even in the very urban context of that locale, even the most vocal, most-autonomously self-directed, most brave person affected by HIV (a woman!) did not want their photo taken for any public displays. Their families especially were most protective of their right not to be objectified.

    In the context of NGO’s in India, it is very often the case that people from outside not directly affected (at their best, do-gooders, at their worst fame-seekers) use the stories and bodies of the dispossessed to sustain their own work and own agencies, sometimes even with the jargon of “self-help”. Without negating what may be good intentioned efforts of the Ambuja initiative, I am worried that given this context, the people used in this photo may not have given full informed consent of the public and publicized use of their images as women affected by HIV. The repercussions for affected individuals can be very very bitter; it is paramount to tread lightly and respectfully.

  21. Reema says:

    Thanks for sharing your insight pk. It makes a lot of sense that NGOs would be wary of using pictures… I found the picture a bit disconcerting also and was conflicted about using it. I agree with your cautions about the use of the picture, and if you think its posting on this page is disrespectful or may have negative ramifications- do share so we can minimize damage.

    While a self-help group is theoretically very empowering and seems like a great plausible solution, I wonder to what extent the goals of Ambuja (the commercial industry who is financing the program) do or do not take into account all of the needs of the women. The women are definitely not in a powerful negotiating position with respect to the industry.

    It would be good if the "self-help" program had oversight from an organization who is committed primarily to HIV issues rather than Ambuja who I fear became concerned about them only after they affected profit.

    Of course Ambuja's effort is laudable and the program is beneficial, but I don't think the vulnerability of the women should be ignored or that the stated interests of the commercial company should be taken at face value.

  22. Reema says:

    Thanks for sharing your insight pk. It makes a lot of sense that NGOs would be wary of using pictures… I found the picture a bit disconcerting also and was conflicted about using it. I agree with your cautions about the use of the picture, and if you think its posting on this page is disrespectful or may have negative ramifications- do share so we can minimize damage.

    While a self-help group is theoretically very empowering and seems like a great plausible solution, I wonder to what extent the goals of Ambuja (the commercial industry who is financing the program) do or do not take into account all of the needs of the women. The women are definitely not in a powerful negotiating position with respect to the industry.

    It would be good if the “self-help” program had oversight from an organization who is committed primarily to HIV issues rather than Ambuja who I fear became concerned about them only after they affected profit.

    Of course Ambuja’s effort is laudable and the program is beneficial, but I don’t think the vulnerability of the women should be ignored or that the stated interests of the commercial company should be taken at face value.

  23. […] have posted on AIDS/HIV infection amongst Sikh women here and here. We have discussed issues around support groups and causes of infection. One of the number […]