In Her Own Words: Violations of Women's Human Rights and HIV
August 14, 2006
XVI International AIDS Conference
Toronto, Canada

Q & A

Available in Word and PDF

Charlayne Hunter-Gault: Let me just remind the audience that if you have any questions or comments please put them on the cards. We have a good amount of time that we can use to entertain those questions because we are going to turn to those questions now. And the first question is for Paulette and/or Judy to discuss the availability of testing in U.S. prisons.

Paulette Nicholas: Basically it depends on what state you're going into because some of them have a practice such as mandatory testing. Once you are sentenced and you enter the prison gates then it is mandatory before you move on to go through this routine battery of testing and physicals.

However, there has been a lot of controversy relating to the testing because Alabama has mandatory testing, but it always maintains a certain number of HIV positive women. So that is kind of conflicting when you are dealing with a large prison population and the numbers of women who are living on an HIV unit range from 18 to 27, year after year after year.

Judith Auerbach: One thing that hasn't been mentioned yet, and I'm actually not an expert on this, but it is my understanding that women in the prison system are tested for pregnancy as much, if not more so, than for HIV infection and at that point they might then be tested for HIV, which could be a pretty devastating experience to find out both you are pregnant and HIV infected.

CHG: Let me just ask you one more question about prisons. Is racism a factor outside of prisons in Alabama and how involved are persons living with AIDS in AIDS policy and service oversight? So, racism, the main question.

PN: When you are talking about Alabama, you are talking about a community that has a lot of challenges dealing with racism. Racism is part of the environment; it is a way of life. There are a lot of ways that it has gotten better but, again, in order for anything to change it depends on the particular group of people who are advocating for these changes, who are putting in the effort to make these changes, and who have the determination to overcome this change.

Yes, discrimination is a big issue in HIV. Services in HIV—often what we see, the ASOs are white, they get funding and they service white communities. Often times, African Americans are forced out of care because of the treatment, the stigma…they are not accepted and looked upon with dignity or treated with respect.

CHG: You heard what Lynde and Sophie said about white women coming out in Zimbabwe. Are any of the people active in the things that you are trying to accomplish white women with AIDS?  

PN: We have some white women, but it is very minimal due to the stigma, and no one wants to come out and advocate. So it is pretty much under ground.

JA: I think we also have to recognize the disproportionate representation of women of color, particularly African American women, but also Latina and Hispanic women in the prison system, to begin with, in the United States. Two-thirds of incarcerated women are women of color. And many women are in prison, if not a majority, for drug related offenses. This may be a linkage to the situation in India as well. In the United States, drug policy is very discriminatory, for lack of a better or more nuanced word, with respect to possession and the kinds of drugs and so on. So we again have an intersection of who is involved in what kinds of activities that are treated very differently and then result in being put in the prison system. And those are the very same women who in many cases are at risk for HIV infection, for a lot of the social and cultural reasons that are not uncommon for Zimbabwe, India, or the United States—having to do with less access to education, to prevention and care services, and being discriminated against—in our case, on the basis of race.      

CHG: Does that have some resonance in India-drug use or drug issues—Anandi or Anjali?

Anjali Gopalan: It is really interesting because I think, for example, among women, especially in certain states—I don't really know much about prisons—but I do know is that there are certain states, especially in the northeast of India, where we see very high rates of intravenous drug use. And it is really interesting because what often happens is that women do not access care until much later than men. There is not specific information that goes out to women. And for the longest time, the infection in a couple of states in the northeast were seen as being driven through intravenous drug use, forgetting that these men also had female partners and were having sex. So the epidemic was only seen as an IV drug use epidemic and that aspect was completely ignored. But, definitely, I think if you see whether women can access services-it's an issue.

CHG: Sophie and Lynde, we have a question from the audience. What are the prospects of more women—white women—going public with their status and what efforts are there to make that happen?

Lynde Francis: I think it is probably very unlikely that there will be more white women because we are getting to be an endangered species in Zimbabwe. There are fewer and fewer white people living in Zimbabwe. The majority of the problem in Zimbabwe is amongst black women. They make up nearly sixty percent of the infections. And I would just like to respond on the prison population-in Zimbabwe we do not have much of a drug use problem amongst women. More of the women in the prison populations are there for prostitution.

CHG: And that is related to the economic situation in that country? Where the inflation rate is 1000 percent or more.

LF: The clients are, of course, not in jail. It is only the women who had to resort to sex work. Of course, some of them will also be there because of illegal abortion.

CHG: Is there any support for sex workers in Zimbabwe?

LF: Not at all. They really are fair game. Every time we have an operation cleanup the prostitutes are the ones that are rounded up first. And they have absolutely no rights.

CHG: Do you see more women becoming sex workers as the economy continues to deteriorate?

LF: Yes, and younger and younger. We have just recently had a survey that shows that the biggest factor in the infection of very young women is actually cross-generational sex. It's not so much the early debut—we have actually managed to push our debut age for sex for girls up a little bit. It has gone up, I think, to 17. But these girls are having sex with much older men.

CHG: Is that the sugar daddy syndrome—where you get an older man to take care of you because you have no other means?

LF: Yes. There is no preparation for any other kind of work. Basically, if anybody has do drop out of school, it is the girl child that has to drop out of school.

CHG: Given the state of affairs in Zimbabwe, is anyone paying attention to this issue? Are there any solutions being put forward by anyone? I know that there are many human rights organizations in Zimbabwe trying to survive.

LF: Yes, there are. A lot of NGOs—I don't know if any of you were at the Networking Zone earlier where Betty Makoni of the Girl Child Network in Zimbabwe has been nominated for a red ribbon award; she does the most amazing work. But the economic situation is that we have 1200 percent inflation, 80 percent unemployment, and the health system is on its knees, and it is not easy to get access to schools because school fees have gone up. So the economic situation for girls and women is very dire.

CHG: Let me ask you one more question on that subject. I know that there are some NGOs still working in Zimbabwe, but are there any like UNICEF, or any of the other ones, that are allowed to work that might provide some lifeline? Any other NGOs that are still allowed to work in Zimbabwe that could offer some lifeline to some of these women?

LF: Yes, they are the only ones that are offering any kind of lifeline. As I said, Girl Child Network is doing amazing work. There was a presentation earlier from Tanguay Women's Project, which is in a very poor area called Binga. There are a lot of NGOs doing an enormous amount of work but you have to look at that in the light that in sub-Saharan Africa, the average per capita aid package for HIV and AIDS work is 187 U.S. dollars a month. In Zimbabwe, it is 4. And that tells you how difficult it is to work in Zimbabwe. It is also kind of soft sanctions because we are not getting the aid and yet we have one of the highest prevalence rates. Having said that, we have managed to bring our prevalence down and I think that is largely due to behavior change. We have got strong programs like Sophie's.

CHG: Sophie, you wanted to add something?

Sophie Dilmitis: You mentioned UNICEF and UNICEF did put a really good comprehensive educational program together. I think that the policies are there but they are not being implemented because in the schools that I went into, I found that book sitting in the library collecting dust.

CHG: On the disproportionate amount of resources going to neighboring countries, I remember on her last tour to sub-Saharan Africa, Carol Bellamy of UNICEF was arguing that it is one thing to put sanctions on the government, but quite another to put sanctions on the people. And she was pleading for a way to figure out how to get resources to the people, going around the government. And I don't know what has happened with that.

Let me move on to Judith for a question that I think you might be able to answer. What do you see as the role of the women's movement in prevention and support for positive women?

JA: The short answer is much greater than it has been. One of the frustrations that I think many of us who have been working in HIV and AIDS and consider ourselves feminists have felt is the lack of integration of HIV and AIDS issues among women and girls with general women's advocacy and women's policy, and even women's health. There is a real segregation with respect to HIV and AIDS. And so it's everything from the scientific research we conduct—which in the case of say HIV prevention but even care and support services, with respect to developing effective models, has been very uninformed by feminist research, for example—to the actual interventions once they get implemented and affect policy. So I think we have had a very poor integration of feminist scholarship and feminist activism around HIV, both for negative, and especially for positive women.

CHG: I don't know who would like to answer this question, so I am going to throw it out. Why aren't female condoms playing more of a role in the AIDS epidemic?

AG: I don't know how many in this room have used the female condom? How many liked it? So, I rest my case. I think there are a few things. One is they are not easily available, they are expensive, I find them uncomfortable, they are squeaky, and they hang outside of the vagina. I think it really was developed by a man. [Laughter]

And so there are reasons why the female condom hasn't been too popular. But having said that, I think it is a good thing because it puts something in the hands of women. Not a great thing but it's there. So I think it's a good thing to that extent.

CHG: Does anyone else have a comment?

LF: We mounted a very, very successful campaign for access to the female condom in Zimbabwe. It was mainly women in AIDS support network and The Centre and trials were done, and basically women really, really wanted to have it. The problem is it is not subsidized to the same level as the male condom. There is only one manufacturer of it, so there is a complete monopoly on it. And although the social marketing was done because of the campaign, it was not really taken on board at the government level. I remember the then Minister of Health standing up in a workshop and saying, "Well, yes, we have to be very careful about what kind of women we give these condoms to" and he said "the ladies of the night might get them and use them for more than one customer." And I was so enraged, I stood up and I asked him, does he check what kind of men they give male condoms to and could he tell me what the difference was between six men using one vagina and six men using one female condom? [Applause]

And he sort of muttered that there probably wasn't much difference and I said, "Oh yes, there is. With the female condom the woman is protected and the men still have a choice, because the kind of woman who would use one female condom for six men in a night are usually working at the back of a beer hall and they certainly do not have any facilities, so they do not wash out their vaginas in between the sex acts." But that was the kind of attitude that we got. Even the family health and family planning clinics have not been really proactive about seeing that the female condoms are given the same kind of prominence and availability. And I think that is very sad because it is one of the few options. Even if it is squeaky, I always tell my clients to put loud music on when you make love. [Laughter]

SD: The Female Health Company has just produced a second line female condom that is much cheaper and part of the reason it is not accessible is because it is more expensive. And the only way that it is going to become more accessible is if governments buy in bulk. And that is what the Prevention Now! Campaign is all about.

Anandi Yuvaraj: With regard to condoms, I want to talk about positive women-our sexual life ends when we know our HIV status. Our sexual and reproductive rights are denied and we do not have access. We are not able to exercise our rights. So we come to women who are not infected-where is the demand? Why is there no access? Because there is no demand from the women community. The demand will come once women exercise their rights. So it's a circle that we need to address. It is not just about a small product. We are talking about how the product will be kept alive and produced because of the demand. There is no demand because women are not exercising their rights. That I think we need to look at. 

JA: Obviously this is a question we all think is very important. I think the access issues that have already been mentioned are very important. The social science literature tells us that the female condom is acceptable in different ways to different populations. Some women like it, some women don't. Some men like it, some men don't. We don't ask the same questions about male condoms in quite the same way, yet we continue to promote them. And I think some would argue, myself included, that if we spent as much time advocating around the female condom, and how it may be appropriate and desirable to some women, as we do criticizing it, and saying what a pain in the vagina it is, we probably would see more demand on the part of women who are in a position to demand it and I think the campaign Sophie mentioned is very important.

AG: I think the key is to include the quality, and therefore pressure on the manufacturer to improve quality. I think if we can get that to happen there will be a demand.

CHG: Sophie, did you say a second line was being developed? Is it better?

SD: It's much cheaper.

CHG: It's the same?

SD: It's the same thing. A little bit thinner, but essentially the same.

CHG: Thank you. Under the pretext of protecting public health, women living with HIV are being denied the right to be sexually active and have children, including alarming stories of forced abortions and sterilization. How can we ensure their rights are protected?

LF: I think it is a tough question because there is still an attitude that once you are HIV positive, your whole love life is dead unless you happen to still have a partner. I remember, I think it was 1993, that I did a talk in Mozambique and I called it "Sexuality after Seropositivity." People were really stunned and appalled and some cried when I brought up the subject that I was facing the fact that I now didn't have a partner and it was going to be impossible for me to have one because there is this attitude that once you are HIV positive that's it. And I think women are particularly susceptible to that because they tend to have a much stronger sense of responsibility. I'll give you an example—I have very rarely had a woman that I have counseled at The Centre who has failed to disclose her status to her partner. But very many male counseling clients have not done so.

The whole thing of forced abortions and sterilizations, it is there, it still is there. It may not be legally enforced, but it is morally, and the pressure on women to not have children is there. But then, at the same time, women are in a catch-22 in Africa, because even though they are positive they are still expected to have children by their husbands' families and they cannot disclose their status for fear of rejection. So they do go on and have children even though they are positive, and at the same time, when they go into their clinic, the nurses say, "But you're HIV positive. Why are you pregnant?" It's a real catch-22 situation for women. The pressures are both ways and until we really start to accept that a positive woman is a woman, she has exactly the same rights, desires, and needs as any other woman, and we start to accept that we have to find ways for positive women to exercise those rights and to live in this world.

CHG: Let me just ask Paulette, do you have a comment on that? The question of HIV positive women being sexually active, being allowed to have children, or encouraged not to have children-do you have a comment on that?

PN: Personally in my advocacy as an activist, I am a strong believer that no one should be denied the choices to exercise their rights-sexually, physically, spiritually, and morally. Not just that, but no one else can make that judgment. What's good for you and what's not for you, that's a choice. It should be supported and you should have all the things in place to offer that support to that individual. HIV does not stop a person from living a healthy, productive life in every area of their life, whatever your choice may be.

CHG: Thank you. Here's a good one. For each pair, if you could ask Bill and Melinda Gates to make one investment to meet your circumstance, what would it be?

PN: Universal access to treatment and care.

CHG: I hope a Gates representative is in the audience.

JA: I would like to see support for prevention advocacy on behalf of women, by women, for women, as well as for men, but particularly for women. Not just the support of the research on microbicides and cervical barrier methods and other, but also the support for prevention advocacy. Meaning the support organizations, indigenous, organic, civil society organizations who know how to do this…but collectively from a much more coherent prevention strategy.

CHG: Sophie?

SD: Obviously, I would have to say treatment, care and support, especially for young women. But what I think has to change-and I don't know how much pull Bill and Bill have in that—is that young women need to be able to access and enjoy their sexual and reproductive health and rights.

LF: So do old women. [Laughter]  

If I had to ask them for one thing, I would ask them to invest in the women of Africa. Not just to send food aid, not just to send money, but to invest in development and education so that the wonderful women of Africa can use the amazing resource—I get very cross when people call my country a resource poor setting. We are so resource rich, and the greatest richness we have is our women, and I would ask them to invest in the education and development of our women and girls.

CHG: I've heard a saying in Africa, "If you educate a man you educate an individual, if you education a woman you educate a nation."

AY: I would ask the Bill and Melinda Gates Foundation to have a comprehensive approach for both prevention and treatment rather than just prevention versus treatment. So I would strongly advocate to invest equally.

AG: I wrote the same thing. I want them to link prevention with care and to stop looking at the epidemic in India in a targeted manner. I mean it's incredible that they continue to do this. They only want to work in the high prevalence states with truckers, sex workers, and now they've added MSMs, without a care component. I cannot understand why someone at this time in our lives cannot see that prevention without care is not going to work. How shortsighted are we getting?

CHG: Just to remind you, we are in the session, "In Her Own Words: Violations of Women's Human Rights and HIV" and we have a question from the audience—I do not hear about the U.S. conditionality and hard push on abstinence. What do you say about the issue of power, money, and ideology on women's rights and HIV? What can we do as African women to pressure the U.S. to get out of our sexuality?

I think I'd like to hear the answer for that from the person who wrote the question.[Laughter]

JA: I think there is an answer in the question there. I will be happy to take on the first part. My organization, amfAR, we are all about trying to promote evidence and have evidence inform what particularly our government, the U.S. government, does both domestically and internationally with respect to HIV prevention and care policy. What the evidence shows is that the promotion of abstinence, and by the way, abstinence really does mean technically in our policy documents, abstinence-only-until-marriage, that that is not an evidence-based approach. There is no scientific or programmatic evidence to suggest that abstinence-only-until-marriage is an effective HIV prevention strategy, whether in the United States or abroad, whether for girls or for boys, or for men or for women.  So I think it is really unconscionable for anybody to be promoting a strategy like that for which there is no evidence and that really just represents a much more ideological, and in many cases religious, orientation than it does a real scientific or practical experiential orientation.

CHG: Judy, do you see anyone organizing to do anything about it?

JA: Oh, yeah. There is very concerted advocacy within the United States, in particular about what our government is doing, again both domestically and internationally, and part of that is monitoring and seeing the impact of the policies that we have exported and sort of coerced other countries into adopting through the stick, or carrot, of money. So it's monitoring the impact of that at ground level, which has taken some time, but I think there's some evidence for that from some groups like CHANGE, and then domestically, SIECUS, the Sexuality Information and Education Council, monitors at our state level the impact of these programs on young people and looking at the actual outcomes and asking the hard questions—have we actually changed behavior? And have we reduced HIV from these kinds of programs? So there's monitoring, there's evaluating and then there is legislative strategies that have been introduced by members of our Congress, the House and the Senate. A number of organizations like our own spend a lot of time directly lobbying our members of Congress and our citizens to pressure their members of Congress to undo the targeted funding for abstinence-only and to promote comprehensive sex education that also is gender appropriate and gender sensitive.

CHG: Lynde, can you answer the second part of the question, what can we do as African women to pressure the United States to get out of our sexuality? What can African women do to apply the same kinds of pressure that American women and others do, to say that abstinence doesn't work for us or shouldn't be the only solution that is put forward?

LF: I can't see that abstinence was ever an accepted solution in Africa anyway. It is not an option for most women because, apart from anything else, probably 70, 80 percent of the infections for women happen in their marriage bed. They are monogamous. They often do abstain until marriage but the men are polygamous and that is something that is acceptable. We have had behavior change and a lot of men will use a condom with a prostitute or a casual partner. The problem is that when you've been to bed with somebody three times you are not a casual partner anymore, so you stop using the condom. I think African women unfortunately still do not have a loud enough voice. We are still too suppressed in our activism. We tend to talk about children's rights, we tend to talk about treatment access, but we're not really attacking the problem where it lives—which is in cross-generational sex and transactional sex and the fact that women do not have the power to negotiate safer sex or sexual activity. To say no is unthinkable because a man pays for you, once he pays he has a right to use your body as he sees fit, when he sees fit. That is something that unless we have policies that change that attitude, abstinence is never going to be effective for African women.

AG: I think we need to organize. Civil society needs to organize. I think you need to pressure your governments. Brazil did it. We, luckily, in India were only one of the expanded focus countries but we can-and we will go to court if we have to-to ensure that the government does not come into our bedrooms. The state has no right in my bedroom and we will not allow it. So I think it's a question of us organizing too and it is really important that we do. Let's not sit back and feel defeated and I think that is key.[Applause]

CHG: I was about to say that we only have a few more minutes and I was going to call for some conclusions on the part of each of the panelists. I think you've gotten us off to a good start. Would anyone else like to come in as we conclude this with a thought that you would like to leave this audience? Anandi?

AY: I have one message for the men here—please understand women and respect their feelings and respect their rights and protect their rights and ensure their rights.[Applause]

LF: I think what I would like to leave people with is that more than 60 percent of the people infected by HIV across the world are women. And probably 90 percent of the burden of care falls on women. And UNAIDS and everybody else is conducting this task-shifting, multiple-tasking women and where the tasks end is at the level where people are least able to cope with those tasks and the least equipped to cope with those tasks. I was in the grandmother's meeting today and this is symptomatic of Africa but I think it's also going to be the story in other developing countries as well-the fact that you have vast numbers of grandmothers caring for grandchildren. I don't know how many of you have read the book, Lord of the Flies—I read it many years ago—and sometimes when I look around Africa I think that that is the scenario for us. We have this vast gap between the children and the power structure and all the people in the middle that were supposed to mentor and guide our children have gone. The children are growing up without the sort of education, and the sort of guidance, and the sort of mentoring that they need to take over leadership in that world, and we need to start thinking about what we're going to do with those young people so that they can become leaders and not repeat the mistakes of their elder generation.

SD: I think that we mustn't give up hope. There's a lot to be done, but we've never had more funding, we've never had more resources, and I think things are starting to change. And the time is now, really, and if not now, than when?

JA: It's not really a thought to leave because I think everybody in this audience already has it—but that is to recognize what may make us special or different one from another as women and girls and to respect that from our different localities and our different cultural belief systems and so on. But at the same time to really take strength from what we have in common—including the recognition of the ways in which gender is still a very basic organizing principle in all societies—and the numbers that Lynde mention really cut across the entire globe. So that women as women and girls as girls—females—still are at very differential risk for something like HIV infection because they are women and girls and I think we really need to keep our gender framework on all of this—and a feminist framework—on the epidemic even as we respect some of our differences.

PN: I feel that HIV is not just my disease but it is a disease that is your disease. It's a community's disease. It's a family's disease. It's a social disease. I think the best power that we have is individually taking responsibility for your own health—educate yourself, empower yourself with that knowledge that you can impact others. Each one take an opportunity to teach one and if we stand together we can all combat this disease.

CHG: Thank you. I have the impossible task of ending this on the dot of 8:00 and it's already two minutes after, and also to summarize, I'm told, in an eloquent way, what has taken place on this panel. I'm going to kill two birds with one stone because it is two minutes after 8:00 and I'm not sure there's anything I can add to the eloquence I've already heard other than to say that it's been so amazing to me—I took a break from the last panel I did to this one and watched the news as the Canadian broadcasting services were summarizing the events here and 98 percent of the coverage has to do with the things that Stephen Lewis said about women in Africa—the most vulnerable, needing support; the comments made by the Bills this morning, enlightened, good comments I thought. Also, as Sophie just said, I think African women's time is almost here. And I think it's up to African women. I've met some amazing women in Africa with FAWA—the African women's organization—which is doing just stellar work and I think reaching across the countries and the continent and the world, women joining hands together to ensure that this eloquence that has been present at this panel is shared by the world is going to ensure that the face of women in the world is a happy face whether she is HIV positive or not.

I thank all of you and I thank, especially, the International Women's Health Coalition, the International Community of Women Living with HIV/AIDS and the Association for Women's Rights in Development for putting this panel together and organizing it in such a brilliant way. Thank you all.