But JASS wanted to change the “dependency” dynamic that international development NGOs were creating. Instead, we sought to foster an engaged community of women leading their own agenda. The familiar development pattern—in which women would receive assistance by playing their role as HIV-positive patients and asking for the “right thing”—didn’t encourage women to be fully themselves. In fact, it prevented them from experiencing a transformational process of discovery, affirmation, and power. We knew that we needed to create a different kind of gathering—one that could get below the surface-level of women’s needs, and address the structural systems of oppression and inequality that were limiting and sickening Malawian women.
 

The relaxed and reflective processes we held invited women to share their stories—to laugh and cry—and in the process, break the silence around taboo subjects and their own lived trauma. The sessions always included food, dancing, and songs. At the same time, they enabled the women to delve into conversation about the major issues impacting their lives, and how they were navigating the complex realities of gender, poverty, social isolation, and a lack of power in their communities. In the process, women found common ground with one another. They began to overcome internalized shame, and recognize their own dignity and “power within.” 

No matter how difficult women’s stories were, we made sure they didn't start or end in victimhood. Rather, we always explored the broader context of inequality, and the power dynamics in both the personal and public realms of their lives. As women reflected on their stories, we asked questions like: Who had power in the situation? What did that mean for you? Does this kind of thing happen to other women you know? Why? What do you think about it? Over time, these experiences nurtured a growth in confidence—the foundation of the women's "power within." 

They had only inconsistent access to medication, and often lacked the food and water necessary to take it. Some women would arrive at workshops ill and malnourished, and at times fall asleep after eating. Sometimes women had to go to the hospital during a get-together. On occasion, women would pass their name tags to others, so they could share in the food and small allowances we provided. JASS facilitators had to grapple with how to address these tangible realities without being able to offer sustained material help. And we had to do it in a way that did not treat women as victims, but rather as potential leaders.

In Body Mapping, women draw their bodies to explore how their life conditions and experiences have impacted them and are carried physically. They map where they hurt, where they have suffered, where they have experienced pleasure, pride, or happiness. This opens a conversation in which their bodies are not taboo, and their struggles aren’t due to personal misfortune. Rather, their bodies hold a vital history of their survival and resistance, knowledge and freedom. Body mapping in Malawi, something we returned to many times, allowed us to begin not with theoretical ideas, or by dispensing information, but through awareness of the body—layered with conversations; skits and stories; and the examination of patterns in their private lives, families, and communities. 
 

One that puts women’s lives and wellbeing at the center of movement building. In sharing secrets and stories, attending to our embodied selves, women not only discover commonalities with other women; they also make connections between their lived experiences and gender inequities and other social and political injustices. A transformation takes place as they build new understandings, and take note of their own survival, resilience, and knowledge—critical capacities for leadership and strategies for change. In these various ways, the gatherings validated and strengthened women’s existing abilities, and built a foundation of critical and political awareness for the movement-building work to come. 

The idea of power within, which affirms women’s innate value and self-esteem, resonated deeply. Women also found the related concepts of power with and power to—ways of imagining their own capacity for resistance and for taking action with others—to be both empowering and provocative. The framework also enabled them to explicitly name the various types of power over—formal and informal forms of domination and control—that tried to keep them powerless.  

Over time, 25 women emerged as leaders. They weren’t necessarily the ones who talked the most, or fit typical leadership profiles, but they showed a desire to get involved, develop skills and engage others. The challenge came as they grew in enthusiasm, and were eager to put the ideas they were learning into practice to make concrete change. And yet while JASS wanted to support women to take action, a shared organizing issue—a focus for change—had yet to surface.

It was a way to strengthen their community leadership, address livelihood needs, and give women experience organizing. We helped women create what we called Personal Action Plans—goals and steps around a change project in their community.

During this first action phase, we provided close political accompaniment—supporting and visiting women in their home communities to understand their contexts, and offering skill-building workshops to help them implement their action plans. We incorporated training about the basics of organizing, including how to choose an issue with other women and how to formulate and present their demands to local decision makers. 

With these actions came a sense of possibility and power to—women could see that they could have a voice, educate others, take action, and be courageous. They could make changes that not only helped themselves, but helped many others as well. JASS facilitated women in documenting their personal stories of change over this period of time, to both heighten their sense of accomplishment, and to enable other women to see what could be possible. 

The relationships, leadership, and sense of community developed during this period served as a foundation for the movement building, mobilization, and campaigns to come.

Prejudices arose. For example, rumors about those believed to have engaged in sex work to survive ("bad women"), and those who had not ("good women"), threatened the cohesion of the group and reinforced shame, judgment, and oppressive social norms. This also threatened the possibility of the women coming together to create a larger change agenda, which was a central goal of JASS’ movement-building work in Malawi. 
 

Among the differences in the room, a common desire for change was also evident. This desire, and the recognition that “we need each other to make change,” laid the foundation for a more deeply felt unity. The experience sharpened the shared understanding of what HIV-positive women faced, and built a sense of collective strength—power with—the ability to work together to make change. The workshops during this period focused on developing leadership skills, including facilitation, conflict resolution, and working with allies.

MANERELA+ represented over 1,300 active members of churches and mosques across Malawi. Given that religious institutions had often perpetuated stigma, shame, and confusion about HIV/AIDS—especially by blaming “loose” women for the disease’s spread—this religious ally provided a crucial counterpoint. In addition to bringing the support of its vast constituency, we knew that MANERELA+ would bring visibility and legitimacy in different circles, including with the government; help secure resources; and add clout to the work led by HIV-positive women.

It took skilled negotiation and sustained work to build trust, create a shared feminist movement-building approach, and lay the groundwork for collaboration. The fact that a number of men in MANERELA+'s leadership were steeped in liberation theology and had a degree of feminist awareness, helped bridge the alliance between the groups. MANERELA+ proved to be a vital ally. As women's organizing aspirations grew, it brought a clear understanding of policy and politics, and played a key liaison role with the Health Ministry and other government offices, and the media.

In the discussions, women raised their usual concerns, such as poor access to treatment and lack of healthcare information. But no powerfully-felt, unifying theme emerged. Women needed experience engaging formal structures of power and decision-making, to make lasting change at a larger scale. Without such a galvanizing issue, the effort looked like it might stall.

This moment of honesty and pain led to a breakthrough. Many women were struggling with body deformities, and as we dug deeper we realized that the source of the physical changes was not the illness of HIV, but rather toxic drugs. And further still, it came to light that although the World Health Organization no longer recommended the drugs, the Malawian government was still distributing them. This “aha!” moment defined our organizing agenda, and gave new and intense traction to our movement-building work. 
 

The core group of women leaders launched a campaign for access to treatment and modern antiretroviral (ARV) drugs, conducting what would come to be called “treatment literacy,” and organizing for improved drugs, treatment protocols, and health. The timing was auspicious: The newly-elected president, Joyce Banda, had long supported women’s rights and had expressed interest in HIV/AIDS treatment. Indeed, her election created a political opportunity to discuss and address issues such HIV/AIDS, and other social justice issues that had been actively repressed before. 
 

Because JASS was committed to a movement-building approach, we wanted to meet this challenge in a way that would not just yield data, but build people-power and community-based leadership. And this needed to be accomplished with limited resources.
 

The 60 women, energized by both anger and hope for change, surveyed another 846 women across Malawi in just over two months. They reached out to their networks and support groups—gathering information, and inviting those surveyed to "join with us." 

The data provided clear evidence that drug protocols and treatment access were adversely impacting women's lives, particularly in rural areas. They revealed that 70% of women living with HIV/AIDS in Malawi depended on the Stavudine-based treatment—the subpar drug still used in Malawi, that left them experiencing painful side effects including body deformities. Because of the easily-noticed body changes caused by these drugs, many of the women faced shaming, domestic violence, and social ostracism—leading them to stop treatment and endure poor health outcomes. When husbands or partners recognized the bodily changes or discovered their spouses were HIV-positive, they often unjustly blamed them for getting the disease. 

There were other findings as well. Women could not consistently access drugs or receive appropriate treatment education because of insufficient locations and hours of clinic operation and frequent stock-outs of drugs. There were other social and political realities that also acted as deterrents to seeking treatment. In several cases, HIV-positive women waiting to be seen had to stand outside clinics in a queue, making their status publicly visible. In addition to subjecting them to social ostracism, this exposure of their status risked other repercussions, such as the denial of fertilizers or land-use to HIV-positive women. 

But the participatory research process also had enormous value for other movement-building goals. Women had taken on new public roles in conducting the survey and doing outreach; they and people around them began to see them as community leaders. And critically for the next stage of work, they had built a network of women around the country who were aware, outraged, and motivated on the issues—ready to be mobilized for change. The foundations for a campaign were in place—strong leaders, trusted allies, and a base of over 1200 women with whom they had connected through the research and other outreach.

The campaign gave the organizing a unified focus and made the demands visible. 

The key challenge was how to strategically position community-based women leaders for maximum visibility and impact. After all, HIV-positive women were a generally marginalized group, even within HIV/AIDS advocacy. We wanted to shift the public debate and change the Ministry of Health’s policies—all without many resources. At this key moment, the partnership with the Malawi Network of Religious Leaders Living With HIV/AIDS (MANERELA+)—the well-connected coalition of religious leaders—proved valuable for helping OBOL achieve visibility and gain the ear of government officials. 

On the day of the event, over 120 women showed up—twice as many as expected. Rather than conduct a workshop, we shifted into rally mode—using powerful speakers and dialogue to help women prepare to share stories and provide evidence of the devastating impact of Stavudine on their bodies and lives. We used the space, and the energy created by the dialogue, to formulate clear demands. They included a call for the immediate transition to quality antiretroviral (ARV) drugs for all women, and scaled-up treatment access and education. 

When the head of the HIV unit arrived, ready to deliver his presentation on the ARV regimen in Malawi, he was greeted by a group of powerful and prepared women with their own agenda. They told him, “We want you to come into the circle and we want you to talk with us.” And they asked him, "Why don't we have access to quality ARVs with fewer side effects?" In this key moment, the women claimed their voice and power, creating a two-way knowledge exchange and demanding responsiveness to their needs. 

We were acutely aware that the process could potentially expose an already-vulnerable group of women to political reprisal. The relationship with MANERELA+ proved vital at this key moment. Because of their networks and connections, they could use an “inside” political strategy—reassuring key authorities—so we could go ahead and hold the gathering and related activities productively and safely. 

At another moment, we were able to navigate a difficult strategic choice. The Dialogue spanned a weekend, and OBOL and MANERELA+ had planned to include a religious service. When we learned that SAVE had also planned one, we struggled with whether it was more strategic to join theirs. In the end, women felt strongly that they needed their own service—both in order to reflect their religious diversity (Muslim and Christian) and so that women would play the leadership role. And so the women, MANERELA+, and the service committee led a powerful three-hour service that deeply conveyed the solidarity, community, and love at the heart of OBOL. 

We had already created key moments of visibility for this demand. Some weeks earlier, the Malawi Network of Religious Leaders Living With HIV/AIDS (MANERELA+) and other allies had organized a forum with the new president, at which women gave testimony about the experience of being HIV-positive, and the devastation wrought by the old drugs. Later, at the outset of the Dialogue, we held a press conference to publicly announce our goals. Because of MANERELA+’s connections, it was surprisingly successful, with more than 25 journalists in the room. Because of our strong and compelling stories, a number stayed to conduct in-depth interviews and report on the proceedings. We got high visibility coverage, including a 20-minute feature at prime time on television. The challenge was how to use this momentum to bring our demands directly to the Health Ministry and president. 
 

OBOL had decided to participate in the SAVE-organized March to S.A.V.E. Children and Their Mothers from HIV Infections, Stigma & Preventable Deaths, at the end of the conference. In preparation, we used the last night of the Dialogue as a communications session. We developed wonderful feminist messages for placards—one for each woman—and wrote a communiqué expressing all our demands. The morning of the march, about 60 women arrived with painted placards and the communiqué, and joined a range of civic leaders. Because we were better organized (and the only ones with placards), our presence and message took over the march. The leaders of the march drew heavily on our communiqué, and read it on the steps of Parliament. Later, we amplified the power of this moment with a meeting with the Ministry of Health that the Malawi Network of Religious Leaders Living With HIV/AIDS (MANERELA+) helped arrange. At the meeting, we voiced our demands for the necessary resources and accessible modern treatment to save women's lives.

Women remained determined to fight to make this promise become a reality—to ensure that they and others could live better and healthier lives, free of discrimination and stigma. There was reason to be hopeful, given that the years of movement building had created a new level of organizational capacity. Women whose lives had become transformed as they worked on the campaign, now had the skills, confidence, and relationships to push for further change. A nationwide network of activists, facilitators, and allies at the village, district, and regional levels had been created. Communication capacity to amplify women’s voices and agendas at a district, regional, national, and international level had developed. And capacity for advocacy, that draws on JASS’ global presence, had created access to many important spheres of influence.