Dressed in brilliant prints and dancing to the beat of six drummers, more than one hundred caregivers and other grassroots women from the International Women’s Communication Center (IWCC) pulled the visiting international delegation into a swarm of welcome and celebration. The occasion was a new beginning: linking existing groups of home-based caregivers across West Africa into a new sub-regional network. Members of the Kwara State AIDS Control Agency, local labor union representatives, nuns, imams, and leaders from across the region sat together as the grassroots women of Nigeria formally greeted them. Representatives from each Nigerian group, dressed in their organizations’ respective patterned uniforms, welcomed each visiting delegate to the newly constructed IWCC training center.  

Following the opening ceremony, twenty grassroots caregivers and their NGO partners from Nigeria, Ghana, Cameroon and Benin gathered to share common challenges and successes, with plans to ultimately develop a West African Sub-Regional Home-Based Care Alliance, the first of its kind. The meeting, hosted by IWCC and organized by GROOTS International, with generous support from the New Field Foundation and additional support from the Stephen Lewis Foundation and Cordaid, aimed to strengthen communication and collaboration between national Alliances across West Africa.

Visiting the Community- Touring the Successes of IWCC

The Nigerian women opened the meeting by showing the international team the challenges they face in their communities. These challenges include the burden of caring for those infected and affected by HIV, strong patriarchal systems that exclude women and lack of government transparency. In addition to learning about the challenges of their work, the delegation took a tour and visited local groups to gain a better understanding of the local context for caregiving.

On their tour, the delegation visited the new IWCC training center, where graduation photos adorned the walls, depicting grassroots women who had learned income-generating skills such as sewing, hairdressing, and cooking. At the center, the delegation also learned of IWCC’s contributions to the neighborhood water supply.

Down the road, the Kwara State Sewing Association, a seamstress cooperative founded in the 1970s, greeted and met with the delegation. They then went to the state AIDS control agency, Kwara State Action on AIDS, where officials praised caregivers for their important role in service delivery. The delegation challenged these leaders at the meeting to include caregivers not only as service delivery personnel, but as equal partners in decision-making. For instance, they emphasized that caregivers should be involved in budgeting the World Bank money funneled through the office. 

The next stop on the tour was a Home-Based Care Alliance in a neighborhood on the outskirts of Ilorin. The Alliance shared their community-run pharmacy, as well as their work breaking the silence surrounding AIDS in their community. 

Piling into vans, the delegation then traveled an hour outside of Ilorin to the town of Ajase, where the local king and chiefs officially greeted the team of women. Here in Ajase, grassroots women had recently secured a one-room building to hold their meetings and training workshops. They had been negotiating with customary and local officials for the space since 2004, during which time the king had supported the women and provided matching funds to IWCC to renovate the building. After their successful struggle, grassroots women consider the space to be an important accomplishment for women’s leadership and visibility within the community.

All of these visits provided the context for the organizing, dialogue and peer exchanges that would occur over the next few days.

Negotiating Resources for Caregivers and Care Work

The West African Leaders Dialogue and Peer Exchange focused primarily on national and sub-regional Home-Based Care Alliance organizing. However, it also gave grassroots women the opportunity to discuss negotiating for public recognition and compensation, and strengthening local development initiatives that collectively empower women.

Through mapping the sources of income for caregivers and caregiving work, groups identified strategies for generating income. Activities like organic farming, soap making, and tie-dye are the most common way that caregivers groups sustain themselves economically while caring for people living with HIV and other chronic diseases. However, outside of community-led social protection schemes such as these, participants noted extreme difficulty in accessing government or donor funding particularly for grassroots groups.

Describing what became referred to as “the funding game,” groups discussed the difficulties in accessing funding and the importance of holding funders accountable to communities.  They quickly identified two major issues: competition for donor funding between grassroots groups and “briefcase NGOs”-- NGOs with well-written proposals but no standing or impact in the community. These briefcase NGOs often disappear after funding runs out, resulting in funneling resources away from communities.

INGOs, as observed by the participants, claim to want to create networks of grassroots groups but then empower a global secretariat to take over activities. This pattern results in either taking away autonomy and decision-making from grassroots groups, or simply failing to disseminate funds to groups on the ground. Groups also noted that governments often compete with grassroots groups and NGOs for the same funds from international donors, such as PEPFAR and the World Bank. It is easier for these donors to distribute one large grant to an NGO, research institution or national government rather than diving many smaller grants amongst grassroots groups, and thus grassroots groups become further marginalized.

(Continued from Huairou Update)

Addressing Government Accountability

Lack of transparency also arose as a common issue across the sub-region, particularly in regards to governmental control over development funding.  As participants describe, once governments receive funding, political relationships dictate where money goes. It is common practice for governors’ or mayors’ wives to start an NGO at the onset of her husband’s term in office, receive large governmental grants, and then disappear after his term is complete. Through this practice, money does not get back to the community.

Others identified corruption in the form of lack of transparency and unclear guidelines and practices regarding dispersal of government funds. Sometimes funds designated for people living with HIV will come into the community with promises of yearly dispersal. Instead, after the initial dispersal, the funds will stop coming, without explanation. Grassroots women view this as tactic meant to keep communities from demanding transparency. In asking for transparency, they could potentially lose political favor, and thus keep funds from going to the community at all. 

However, many of the participants felt that the only way to survive “the funding game” is to hold governments and donors accountable and felt this is an important role of the national Alliances and the sub-regional network.   Groups shared that Home-Based Care Alliances are building national coalitions of NGOs working on the ground to pressure the National AIDS Commission to address corruption.  Home-Based Care Alliances also advocated to have members sit on Local and State AIDS Control Councils to ensure that funds get to the ground.  Caregivers insisted that these councils serve as accountability structures and that representation on these boards should include caregivers and women living positively from the community they serve.  Through this discussion, participants recognized the importance of exchanging such practices and strategies with their peers and creating a West African network as a learning community, especially because of the similar challenges faced in each country.

Sharing National Home-Based Care Alliance Organizing

Through the exchange, leaders gained an ability to better articulate their own and each other’s work in the region and saw the importance of federating caregivers nationally and as a sub-region, anchored by the bottom-up national organizing of the Alliances.  Caregivers from the 4 countries clarified their organizing structures from the local to the national levels and indicated the number of caregivers organized in their Alliance to get a better sense of their collective power.  Groups also debated their various leadership development models and outlined the values and visions from which they grew, articulating shared values that will serve as a base for their sub-regional organizing. 

The Nigerian representatives shared their accomplishments of organizing a multi-stakeholder coalition of caregivers and women living positively across 5 states of Nigeria- a force of nearly 28,500 members of which 5,000 are from IWCC in Kwara State-a result of over four years of coalition building.  Of those in Kwara state, 885 caregivers are in 21 groups with over 700 serving as “site coordinators” hosted at hospitals and receiving monthly stipends and formal positions at local hospitals funded by PEPFAR through the Institute for Human Virology. 

Representatives from Cameroon shared their experience of building a national network of grassroots women conducting local development work known as CAGWESA, which represents 28 groups in six regions.  The network, which is estimated to have 2,000 caregivers among its members, isanchored by one of its grassroots member groups, Ntanka Village Women Common Initiative, and includes Muslim, Christian and Animist members along with French and English speaking groups.

The Alliance in Ghana, though they have only recently begun organizing compared to Cameroon and Nigeria, has a membership of 41 community support groups of caregivers, all living positively, with a total 360 members across the three northern regions of Ghana.  Similarly, in Benin, 405 caregivers belong to a network of seven groups of people living positively and sympathetic community members. 

Building a West African Network

As this meeting was the first opportunity for groups in West Africa to meet specifically as a sub-region, it was an important opportunity for members to understand the value of forming a network for mutual support, peer learning and collective influence. Caregivers also learned about the vision of GROOTS, and how a global network can support both national and sub-regional networks to push global actors to be accountable to caregivers on the ground and to facilitate such dialogues.  

Leaders outlined concrete benefits of a sub-regional network, from the ability to hold each other’s governments accountable to getting AIDS and development resources to the ground.  These benefits could help to challenge conventional development thinking, which makes assumptions that caregiver’s are disparate, uncoordinated and difficult to contact for direct investment.  

By the end of the 4 days, leaders developed a one-year action plan for developing working agreements and structures of a West African network. The experience in Nigeria was the first step in a long path to ensure grassroots leaders and their NGO partners are equal stakeholders in the vision and development of the network.

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