A 47 year-old woman farmer in Kenya may not fit conventional descriptions of pioneers in healthcare. But Violet Shivutse is an empathetic visionary who, at the peak of the AIDS crisis in her country, has brought together nearly 30,000 caregivers across 11 African countries to care for people affected by HIV and AIDS.
In 1996, Shivutse was working for a farmer’s initiative for which she had to go house to house and train people in horticulture practices. She observed how unbalanced the division of labor and authority between women and men was, and the adverse effects of that. Men were given authority over decision-making for agricultural programs. Women worked in backbreaking labor for low wages, and were denied ownership of farmlands even though they represented 80% of the workforce. Lack of ownership and autonomy rendered them vulnerable. Shivutse noticed parallels in healthcare provision, as well, and decided to start helping the women in her community by bringing health workers directly to them. She worked with mission hospitals to create mobile health clinics that would go to church halls and classrooms to provide medical facilities to local communities.
This was Shivutse’s first step in establishing Shibuye Community Health Workers (SCHW) — the Kenyan branch of an organization called Home-Based Care Alliance — where the vast majority of caregivers are women. Collectively, they treat and care for around 200,000 friends, relatives and neighbors, many affected by HIV and AIDS. As of 2015, 1.6 million people in Kenya were living with HIV, and Shivutse has noted that what these patients need most alongside medicine, nutrition, and supplies, is care. She notes:
Many [patients] are in need of a caring presence, who understands how the virus changes their entire lives… Since the beginning of the crisis, our country’s caregivers have served as a first line of defense—treating long term patients directly in their communities and homes. Caregivers often filled the gaps where formal health care facilities were lacking… Beyond that, caregivers maintained social ties for those affected by AIDS and HIV. They tended fields and defended the land rights for friends, relatives, and neighbours. Caregivers tackled complex social stigma and told the true story of how many came to be afflicted. As Kenya’s AIDS pandemic spread, caregivers also found themselves increasingly in demand.
As the organization grew, Shivutse also noticed that women were dying in childbirth for lack of medical care. She convinced the hospital in her community to train traditional birth attendants and to include them through outreach programs rather than ostracizing them. “Caregivers strengthen the social fabric because for us, in an African context, any sick person belongs to their community … It’s not just about health facilities that are collapsing. No. It’s actually what … people should do when people fall sick and have a long-term illness. We are not just responding to healthcare,” she said.
Local caregivers were strained to their limit when the AIDS crisis hit. For all their efforts, though, the caregivers found themselves marginalized and excluded from policy discussions about HIV. “After a while,” she says, “I realized that this was because so many caregivers worked in small groups or even in isolation. We needed a platform to come together and define our goals. In short: caregivers needed to organize. That’s why I founded Kenya’s branch of the Home-Based Care Alliance… Our main goal is to raise a collective voice to lobby for recognition of caregivers as key players in healthcare.”
Shivutse also emphasizes Shibuye’s focus on empowering women as agents of change. “We train the women to develop their natural talents and build their leadership skills,” she explained. “So women living with HIV/AIDS should drive the program for HIV/AIDS while widows should drive the program for widows.” Shivutse also points to Shibuye’s success in initiatives aimed at empowering women who headed poor households, by training them in farming techniques. “Now they are able to put food on their plates,” she said. The organization also trains women in how to generate income by selling their crafts through entrepreneurial endeavors. Women now have a voice in shaping policy by addressing themselves directly to the government authorities.
Despite their successes, the organization faces challenges of scale and resourcing, which is too often the case with local community-based organizations founded and led by a member of the same community. “Our entity is a community-based organization and it has a particular area of jurisdiction that we can work in and can’t go beyond the geography of the community. Another challenge we face is when we think of expanding this organization beyond a community-based to NGO level. It becomes expensive and needs technical expertise that grassroots women are not able to engage in. Our funding is often stretched thin. Even though we have a lot of women working full-time in this work, the funding we receive is not enough for full salaries for these women. So we constantly have to rely on voluntary work which is not something that encourages women to work in the long term.”
But the organization has clearly evidenced transformational change. “Our biggest success,” she said, “has been positioning grassroots women in development and making these women the ambassadors of change.” Her leadership is about facilitating, not dominating, she said. And by showing true empathy, by putting oneself in the position of the other, “and coming out with strategies to change this situation you’re empathizing with.”
As of 2017, SCHW — which started with 25 women — has around 3,200 members. In recent years the organization’s advocacy work has focused on creating enabling relationships between communities and health facilities, helping caregivers organize and access resources and key policy-making forums. The organization has also committed to a systemic, community-centered approach to provision of services, expanding its work to include primary health care, vaccinations and advice on nutrition, hygiene and family planning. According the the Inclusive Resilience Journal, SCHW has also experimented with organic farming techniques and offered practical solutions to government programs that usually serve large-scale cash crop farms. Realizing that AIDS widows were often being evicted from their land, SCHW set up local village level multi-stakeholder platforms to protect vulnerable women’s control over their land, and they are also in dialogue with the Ministry of Agriculture on questions of land tenure and agriculture, engaging multiple national ministries to influence the county budget to reflect women’s resilience priorities.