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The Future of Female Leadership in the HIV/AIDS Movement, Part 1

By Kellee Terrell

May 30, 2012

In 2010, E. Tyler Crone, J.D., M.P.H., the ATHENA Network's coordinating director, and I had a very interesting conversation about the report Transforming the National AIDS Response: Advancing Women's Leadership and Participation, which highlighted the serious need for more female leadership and participation in policy making, as well as funding for grassroots HIV initiatives and programs that focus on women.

What the report's team of researchers found was discouraging. While the face of the global HIV epidemic is female, there was an alarming lack of female leadership in decision making, especially from HIV-positive women. This lack of involvement, particularly on a policy-making level, is so dangerous because, without direct input from HIV-positive women themselves, any initiatives are unlikely to be effective.

Fast forward to the present, and we find ourselves in the midst of serious local and federal budget cuts, in the middle of a serious war being waged on women and reproductive health, and on the cusp of the 2012 International AIDS Conference (AIDS 2012), which is why I thought this was a good time to revisit this topic together with a diverse group of female leaders in the field of HIV. We explore their experiences, whether or not we are seeing improvement in female participation in the HIV movement and their thoughts on the future of female leadership in the HIV movement.

Participating in this discussion are: E. Tyler Crone, the coordinating director for the ATHENA Network's USA branch; Naina Khanna, the director of policy and community organizing for Women Organized to Respond to Life-threatening Disease (WORLD); and Marsha Jones, the co-founder and executive director of the Afiya Center HIV Prevention & Sexual Reproductive Justice.

E. Tyler Crone, J.D., M.P.H.

E. Tyler Crone, J.D., M.P.H.

Kellee Terrell: Tyler, I know it's been a short time since we spoke last, but has being a female leader in this movement improved, stayed the same or gotten worse?

E. Tyler Crone: I unfortunately have a pessimistic voice to offer on this. But I'll put a caveat on by saying that I'll be talking about things on a global landscape, and maybe what I see within the U.N. I'll try to leave speaking to what's happening in the U.S. to Marcia and Naina.

I'll flag a few different things that are incredibly challenging that we have seen since AIDS 2010. If you look at the narrow context of the International AIDS Conference, and see that as a mirror of where we've come and where we haven't, there was -- there is -- fantastic leadership, such as Naina, Delores Dockery, Beri Hull, and others who are sitting in key positions within the programming committee for this International AIDS Conference. And yet, even with these amazing leaders in place, it's been an uphill climb to keep women in HIV on the agenda. I've found it really disheartening to see that we're having to double down on our efforts to keep women -- that's women in all our diversity, and particularly women living with HIV -- front and center on the platform, especially at AIDS 2012.

I also see a real struggle to get young women and emerging leaders, particularly young women living with HIV, on the agenda and in positions of power. That, to me, is another depressing fact. And one of the substantive ways in the HIV movement that I see this play out is in the focus on prevention of vertical transmission. One of the ways that's playing out globally is that the plan on eliminating transmission only looks at HIV-positive women as mothers of babies, and not as women and the health care that they need to survive. The current focus doesn't utilize the women's rights approach, and it's not looking at women in all of our diversity in an inclusive and robust way.

One last point is to just look at the broader political landscape. I think we see a continued struggle on the women's rights and health agenda, both nationally and globally. In the United States, with the crazy statewide legislation being introduced about trans-vaginal ultrasound, cutting back on comprehensive sexuality education, and challenging family planning funding, there is this assault on women's health and choices and autonomy.

And then globally, in the U.N., we see that same dynamic playing out, where the very fundamental infrastructure and architecture for women's health and rights -- the International Conference on Population and Development process, or the Commission on the Status of Women -- have had increasingly conservative tides come over. And there has been challenge to the language of even gender equality by the Holy See.

Kellee Terrell: Naina?

Naina Khanna

Naina Khanna

Naina Khanna: I would have to agree with Tyler in many ways. I would say that, no, it's not necessarily getting better. In fact, in many ways, unfortunately, it seems to be getting worse.

The political environment and the backlash against women overall create a really difficult context. When you look at women within the HIV epidemic who are likely to already be marginalized on so many different levels -- race, class, access to education, access to technology, literacy levels, the digital divide -- it only seems to be getting exacerbated as time goes on. And then, of course, there's a war on women's health, on women's bodies, on women's choices.

We are also seeing funding cuts and slashing of budgets and tightening of belts across the board, and the most impacted by these cuts are women. So something as basic as cutting bus lines, or reducing levels for particular social services, is going to impact women most and first. In terms of power and leadership, restrictions on funding overall tend to make it worse for women. In order to meaningfully participate and not just be a token voice at the table, we have to invest in leadership. Oftentimes that's the first thing to go.

Unfortunately, even though research has shown these intersections between poverty, violence, gender-based violence, and HIV, there's been very little corresponding response, in terms of leadership, federal leadership, and certainly leadership by decision makers in really institutionalizing a response that looks at all these intersecting factors.

Within the HIV community, too, unfortunately, it's become really politically unpopular to take on and tackle women's issues. There are some brave male allies who have been champions for women, and that's much appreciated.

But I do want to point to the establishment of this new federal agency working group on Women, Violence and HIV, which was just launched a couple of months ago. Women leaders have been talking about the intersection between violence against women and HIV for years, or decades. Finally, we were able to get this federal-level interagency workgroup that's looking at these issues from a global and a domestic perspective. But this is two years after the National HIV/AIDS Strategy was released, which had no mention even of violence against women as a contributing factor to the HIV epidemic here in the U.S.

I'm a little bit hopeful that we have this new workgroup in place. I think it is a good sign. But it's been a long time coming.

Marsha Jones

Marsha Jones

Marsha Jones: Living in Dallas, living in Texas, living in the South, it's very bleak for me. I really don't see things getting that better -- I see my work getting harder. Some days I'm like, "Will it ever get any better?" Especially with this last year. And not to repeat what's already been said, but with these constant attacks on women and women's health, I don't think things have gotten better. And the world seems to be OK with it, except for the women who are fighting to make it stop. And when those women do step up, when we do begin to step up and rally around the injustices that are happening, we are looked at as being rebellious or having some sinister, ulterior motive.

It's like, all of a sudden -- excuse my language -- but now I'm a bitch because I'm stepping up to the table, stepping up to the plate. It's sad, because we still have to fight for just elbow room at the table. And that's why I say that there's an appearance that things may be getting better, because we see some women sitting at the table and may think women are making things happen. But really, we're fighting just for elbow room.

So I think that while things are happening, there is so much more that's got to happen. And I am appreciative of the men that are our allies. But they are so few and in between. Sometimes you are afraid; you don't know who you can trust, and who you can't trust. There are men in this city who were my friends until they realized I was a part of a 30 for 30 Campaign. And now I'm their enemy. It's like: "Women, what are you all trying to do to us?" My response has been, "We're not trying to do anything to you!" It's absolutely crazy. Sitting here in Dallas, I'm usually the only person at that table speaking for women. And then I get an e-mail that says, "We can fund you if you can give us a prevention program, but it's got to be MSM [men who have sex with men] driven." And I'm saying, "I'm a women-centric organization! I can't give you that." So, yes, it's very frustrating. I really want you to hear the frustration in my voice.

Kellee Terrell: Oh, I can, don't you worry. [Laughs.] And what you are saying is really interesting, especially regarding this MSM and women divide in the HIV/AIDS movement. At the United States Conference on AIDS, I heard many people complaining, "Why is there no plenary around women? Why are there so many workshops geared for MSM?" I could hear the resentment in their voices and, normally, I cringe at those types of questions, but the question around the plenary was a good question. I wonder if the people who make these decisions about policy, funding and visibility know that they are creating these rifts. Marsha, with your work, have you seen this same type of conflict?

Marsha Jones: Historically, marginalized communities have always been pitted against other marginalized communities. The government has us fighting for small pots of funding for programs, when they're not even sufficiently funding either program! There's no need for black women and black MSM to allow the government to allow us to have any fighting over programs that aren't serving the needs of either one of those communities. But that's the system; it happens this way all the time. And we can't keep falling into that.

Kellee Terrell: Naina, something you said earlier I thought was really interesting. You said taking on women's issues was unpopular. What have been some of your experiences that have helped you come to this conclusion?

Naina Khanna: I want to say a couple of things to that. One is that women are stronger when we have a unified voice. And so the flip side to my response in the first question is that some things are better, in the sense that we do have coalitions like 30 for 30. Since 2010, a lot has transpired around the National HIV/AIDS Strategy. Its release, and the organizing leading up to its release, did activate a lot of women and women-focused organizations to say, "We need to figure out how to work together, because we're all getting screwed."

And so, out of that insurgence of women forming an informal coalition to work on things -- like gender monitoring and the National HIV/AIDS Strategy -- has evolved this 30 for 30 Campaign. So, in a domestic context, there is more unified leadership. And that is fantastic. That makes it easier for anybody to step out and present, and put forward an agenda, and be able to say that this is a collective agenda. This is not one individual's agenda. This is not one organization's agenda. This is a unified message.

But oftentimes we're faced with decisions that are made really quickly, without a lot of transparency, without adequate consultative process. And a lot of us, I think, as women leaders, value the importance of the consultative process in decision making. When not enough time has been structured into a decision-making process that allows for that, that presents a problem in terms of our own accountability to our constituencies, as well as our ability to meaningfully input into a conversation.

Those things are all, obviously, structural barriers to women's meaningful participation. Also, women are pretty consistently outnumbered. Certainly women living with HIV, and certainly women of color, in a U.S. context, are pretty consistently outnumbered in any decision-making around the epidemic. So when you're constantly in a minority, you're always sort of playing catch-up.

Kellee Terrell: Tyler, has this been your experience as well?

E. Tyler Crone: Yes. One obvious observation goes back to what Naina and Marsha are saying, that it all comes back to money, and where is the investment going.

One of the things that I think has become increasingly clear since 2010 is that the funding for HIV is narrowing in. There is less and less core funding, full stop. And there's less and less funding for women's rights. I think you see this piece of meaningful participation challenged.

Now, I don't feel like it's a conspiracy theory to say the money and the power and the decision making are in the hands of the men. You do see a lot of power and a lot of money and a lot of decision making concentrated within the MSM movement. And it's complicated.

The health of men who have sex with men in Africa is a really challenging human rights issue. I'm not sure how I can articulate this in a way that couldn't be misinterpreted as harmful and divisive, because that's not my intention. My intention is just to point out that while there are these catastrophic ways in which, if you're a man who has sex with men in some different countries, you could be put to death, which is an egregious human rights violation, there's also funding available for that advocacy, and for those movements. There's also funding available for the work with men and boys for gender equality.

So, money going toward straight men and money going toward gay men again and again. Instead of finding this kind of synergy around the ways gender and equality affect us all, I feel like women get left out. A friend of mine shared an inside comment being made about a letter I had been one of the authors on, saying, "Why aren't there women living with HIV and women of color from the U.S. on the plenaries?" And some of the response back was, "Why are they becoming the identity police?"

So I think it goes back to Marsha's comment that if you're a woman who speaks up, or if you're speaking up about women, you're all of a sudden an angry feminist, or the identity police.

Kellee Terrell: We talk a lot about the importance of engaging female leaders in this movement, but it's also important to talk about how stigma, especially among women, prevents them from engaging in advocacy and makes it difficult to mobilize women. Marsha, you do a lot of the work with women in the South, what have you seen?

Marsha Jones: Stigma in the South is huge. If you're trying to develop women, trying to develop leadership, when women are afraid of the backlash that their being positive is going to bring, then it's kind of hard to get past that. Just trying to get women out of their homes and onto the front lines can be extremely difficult. Or not necessarily on the front lines, but just finding a place to work so that women's voices will be heard. That can be a challenge.

Another barrier is women not having access or money and that plays out in small things such as transportation, childcare, you name it. And having centers that focus on women's needs are important, too. Not having organizations that are female focused can mean not getting food vouchers or other things that are important in order to maintain families, and the issue of women taking charge of their lives and being leaders may not happen.

Naina Khanna: I would have to say that the major barriers are structural. In the U.S. context, when we're talking about HIV-positive women, we have to be honest about the ways that racism, classism, power and privilege, and access really impact HIV-positive women's ability to participate, and to participate in any kind of meaningful way.

It doesn't mean anything to schedule an FDA hearing on new prevention technology in Washington, D.C., and publicize that through the federal register. That doesn't mean anything to women living with HIV unless we equip them with the tools to understand what that is; to let them know that it's happening; to explain what the possible consequences are; to talk about ways to have an impact on the process; and to physically try to get some people there, and get them able to participate. That's not as simple as setting up a conference call and even that's not simple, because there is skill building around that.

I know one of the things that Marsha at the Afiya Center has done is host a group of HIV-positive women to sit around a table and call into a phone call on a policy issue that impacts women living with HIV. Those are the kinds of ways that we break down barriers to participation.

But, overall, it goes back to race, class and all of those other structural barriers that really prohibit participation. When things have to move quickly, and when decisions are getting made, it's not really in the interests of those who are empowered to increase access to those who are most impacted. So we have to radically redefine the decision-making process.

You see so many organizations around the country where there may be HIV-positive women who are like second or third in terms of leadership within their organizations -- or fourth or fifth -- and just can't break through to the next level, and are maybe being consistently disempowered, even within the context of their own organization. With our steering committee of positive women leaders from all over the country, we have some seriously badass and fierce positive women that are participating and setting the agenda for the Positive Women's Network across the country. But at the same time, if one of our leaders wants to go to a training, meeting or event that we're organizing, sometimes she just literally can't get permission from her supervisor to attend.

So that's what I mean when I say positive women are being disempowered from participating in places where they can get skills, get more leadership, or just really participate in a decision. There are women who are actually told by their jobs that they can't go to some really important decision-making meeting, even if they are going to get themselves there, or have the other resources to get there. They risk losing their employment.

This is especially crucial when you look at the fact that a majority of women living with HIV are unemployed or living in poverty. Those who are employed are definitely not in any position to risk their employment, because historically employment has been very tied to health care access. And our income level has been very tied to our level of access. And so all of those things are interconnected.

This is part one of a two-part discussion; you can read part two here.

This transcript has been edited for clarity.

Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.

Follow Kellee on Twitter: @kelleent.


Copyright © 2012 Remedy Health Media, LLC. All rights reserved.




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