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