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Women on the frontlines of the AIDS pandemic in Africa


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Featured organizations

Photo by Lucy Steinitz

Women supported by the Musasa Project in Zimbabwe. (Photo by Lucy Steinitz)

The Home Care Department of St. Francis Nsambya Hospital in Uganda provides quality and loving holistic home-based health care services to people living with HIV and AIDS, their families and their communities.

Sophiatown Community Psychological Services in South Africa provides psychosocial counselling, home-based care, along with a programme developed specifically for “strengthening the wounded caregivers” including professional counsellors, home-based care workers and grandmothers.

The Musasa Project in Zimbabwe supports the needs of women affected by gender-based violence by providing shelter services, psychosocial and peer counselling, legal assistance, and training in advocacy for women in Musasa’s anti-domestic violence and survivors’ clubs.

Ripples International in Kenya empowers women, children and communities through holistic support that addresses health, education, nutrition, shelter, HIV-transmission prevention, child protection, and programmes to promote economic independence.

Until recently, the proposition that “gender inequality is driving the AIDS pandemic in Africa” was not widely accepted – it was considered ideological and agenda-driven. Now, it is de rigueur – particularly among those who work on the frontlines of the pandemic, who see its destructive impact in the prevalence and spread of the virus.

At community level – where the work of keeping people alive, living positively, and reaching beyond the devastation of AIDS is thriving – women are at the heart of the response to AIDS, and have become the experts on what it takes to resurrect lives and reclaim hope.

Recently, we were privileged to have a dynamic and powerful conversation with some of those women. Here we share with you their insights and expertise on why it is that women are driving the response to AIDS at community level, what the consequences of their labour are, and what it achieves.

Here is a synopsis of our conversation with:


Dr. Maria Musoke
Programme Director
St. Francis Nsambya Hospital, Home Care Department, Uganda


Netty Musanhu
Director
Musasa Project, Zimbabwe


Mpumi Zondi
Clinical Director
Sophiatown Community Psychological Services, South Africa


Mercy Chidi
Director
Ripples International, Kenya

Women leaders at the heart of the response

Maria: I think women are at the heart of the response to the pandemic as caregivers because culturally, girls are nurtured to become the carers in the home right from the start. For example, I remember as a child, when my mother delivered, I would stay at home to look after the baby, while the boys would go to school. It is also perception – everyone believes that women are better carers and immediate nurturers. When a patient goes to hospital for example, someone has to go and care for them because we don’t have enough nurses – and it’s the women.

Mercy: I would agree with that. Our cultural system is that women grow up with the role of carer. If your mother has to go to the market or fetch firewood and water, it inevitably means that the girl is left taking care of the home and cooking for her siblings. We women are brought up to be carers as opposed to being cared for. But I think this is also what shapes us into leaders.

Women’s role as caregiver has led to an ease around sharing problems with women as opposed to with men. In a typical family set up you will find it is easy for children, and even other relatives, to openly share with the mother or daughters in the house. Women carry a lot of responsibility. I can share from my experience: for 11 years, I found myself working in Nairobi and returning to my hometown every other weekend for a relative’s funeral – maybe it was an uncle, a cousin or auntie. No one wanted to talk about what really happened – of course at this time there was very high stigma – but somehow, in the midst of the funeral, somebody would come and confide in me that it was AIDS. And that sparked something inside of me that said “I want to take up this challenge and I want to lead and see what kind of difference I can make.”

Photo by Alexis MacDonald/SLF

A worker with the Umdoni and Vulamehlo HIV/AIDS Association (UVHAA) serves lunch to children in KwaZulu-Natal, South Africa.

Mpumi: If I think about my role as a woman and also as a leader in the programmes I run, there is a unique touch that I bring as a woman. My eye will pick up things that a man would not necessarily pick up, and I respond from that place. For example, when we are working with a woman in a community or a family, and we want her to go to the clinic, we think about what she will do with her baby. If we tell her she must go to the clinic, we provide her with money to do so, but we also support her in finding someone to mind the baby because she doesn’t have the energy to carry the baby on her back. Also with the team that I lead, if you told me on Friday that you have to leave early, I would follow up on Monday and ask, “How is everything now?” This is positive, but I find that sometimes it can be draining. When you watch male leaders they tend to be all logic and getting the business done, and it can be frustrating. I find that I get involved at a deeper level than just making sure the work is done. I feel there is more responsibility on me as a woman leader.

Netty: In Zimbabwe women are taking on so much responsibility for frontline response to HIV and AIDS that this removes them from opportunities of being involved in leadership at a national level. If you look at organizations that are providing much-needed services, they are relying upon women at the forefront of this response. On a positive note, you start building and identifying women leaders through this community response to HIV. My worry is that the perception of government and big donors is that these women are not important, so they are not reaching out to this leadership that has been nurturing itself, which means that their experience and knowledge remain at community level instead of reaching far and wide. These women leaders are being overlooked. I think the government needs to do much more in terms of recognising the responsibility that women are taking on in the area of HIV and AIDS response.

Home-based health care

Photo by Alexis MacDonald/SLF

A home-based care worker with UVHAA delivers supplies to a client.

Sub-Saharan Africa is home to over 65% of all people living with HIV worldwide, but has just 3% of the global health workforce. Where national health systems fail, grassroots organizations are filling the gaps. The term “home-based care” (HBC) has come to broadly define any health-related services that fall outside of the care received in a hospital or medical clinic. As such, HBC includes a diverse range of activities that vary widely across the organizations with whom the Foundation partners. HBC workers may provide home visits where they bathe their clients and carry out household chores, provide counselling and food. They identify families in crisis and help them find the support they need. HBC workers may also bring “mobile clinic” services directly into isolated communities that include HIV testing, pre- and post-test counselling, delivery of HIV medication, and treatment for opportunistic infections.

Organizations created by, and for, HBC workers are increasingly providing stipends, training and support, while forging ahead on the creation of regional HBC networks – a critical yet underfunded component of HBC work. The Stephen Lewis Foundation is dedicated to partnering with these organizations and ensuring funds are available for this vital work.

Women at the heart of home-based health care

Netty: Our experience is that home-based care is carried out predominantly by women – it is unpaid and women are working with little resources and very little recognition from government. I worry because this means the government is divesting its responsibility to women. Women are expected to take on the responsibility of caring for the sick. Even though in Zimbabwe we have a home-based care policy, it is not being resourced, because women are doing it for free. And I think it’s critical that donors and partners recognize this, along with the fact that these women have families, are mostly widows, many are HIV positive - and the burden of this work compromises what they are then able to do. They are struggling to provide for their own families, and yet they spend so much time providing a service that is unpaid. No one bothers to cost that time, and the amount of time and energy it takes is shocking.

Mpumi: Here in South Africa some home-based care workers are given a stipend, but there is so much that the workers are expected to do with very few resources. The women are so overwhelmed with what they must do in their role as home-based care workers – to the point that sometimes they open up their own families to risk. Family homes end up being extended clinics – they live in the community where they work so there are no clear boundaries, they are exhausted but they can’t say no because these are their neighbours and so they help at the risk of neglecting their own families. People trust women more easily and open up to them and there is a better emotional connection - they are not just healing the body, they are counselling and healing the mind - but it comes at a cost.

Photo by Alexis MacDonald/SLF

A community event aimed at local young people put on by Kimara Peers in Tanzania.

Women at the heart of counselling

Maria: I think women play such a central role in counselling because when they counsel, they think about their own situation: they use their experience in a positive way to help others. In the organization that I lead I have been trying to get more men on board as counsellors, but every time we hold interviews only women come.

Mpumi: We have a team of 17 and we do have five great male counsellors. I must admit, it can be an advantage for us to have more female counsellors because our female clients immediately feel more comfortable and safe seeing another woman welcome them. But our male counsellors also play an important role. I admire them because they help renew our hope in healthy and functional men in society. These are the men who can sit with other men in counselling and say “this is not the only way to communicate” or “deal with your anger.” It is very refreshing that we have strong and lovely and healthy men.

Netty: I think the reason why we have a lot more women as counsellors is specifically because they are the ones that feel the burden and go out to get information about how they can do this work. I think one of the things that women bring is their lived reality, their own experiences. You ask a group of women if anyone has not been infected or affected by HIV, or has not been affected by gender-based violence, and you will find that they all have experience of it – and they bring this to counselling. And women are inquisitive. You will not find a community meeting where women are not curious to know what is happening to others. Men can just pass through and are not necessarily worried about why people are absent, but women will ask. I think that women have a lot more skills to reach out and talk. And we talk! We get to know each other’s issues and therefore we naturally become counsellors to one another. We have a “survivors club” where we impart skills for counselling, and the women who attend not only support each other but are the ones who become the first line of defence in communities.

Photo by Neal Hicks/StudioFeed

A doctor at St. Francis Nsambya Hospital’s Child Clinic in Kampala, Uganda. (Photo by Neal Hicks/StudioFeed)

Women responding to sexual violence and AIDS

Mercy: About five years ago I started working with children who are survivors of sexual violence. As I mentioned earlier, in Kenya children generally find it easier to open up to women about some of the challenges they face at home, especially to grandmothers and the female teachers in school. I began coming across children who would confide in me about violations in their schools, in their homes: often these are cases where there have been multiple instances of sexual violence at the hands of relatives. Because of the enormous scales of sexual violence – especially child sexual violence – that I and the staff at Ripples encountered in the community, it prompted us to open a temporary shelter where girls can seek refuge while we try to intervene in their home situation. Unfortunately I would say a good percentage of the children who have been victims of sexual violence have become infected with HIV. The relationship between HIV and sexual violence is enormous, and unfortunately very little awareness is being created about it. It is not reflected in the statistics at the police station: many cases are never reported because when a woman or child goes to the police to report it, they have to undergo a lot of scrutiny and questioning and it can be very humiliating.

Maria: What Mercy is saying is really true; we have a lot of similar issues. In addition, many of these girls have lost their parents and cannot go to school anymore and have to find a way of living. In many cases they are taken to be house maids and are prey to abuse. Married women will stay in abusive marriages because the man is the sole supporter. If women were empowered economically they would be able to stand up and find a way out, or at least report the abuse.

Mpumi: We also see a lot of teenagers who are getting involved in sexual transactions with older men while trying to fend for themselves. Even though there is no “force,” it is abuse and it is illegal.

Netty: One of the issues that we keep grappling with is the link between HIV, violence and the economic empowerment of women. As long as we do not talk about and link all the responses which necessitate the economic empowerment of women, women will continue to bear the burden of home-based care and be the receivers of violence in the community.

Mpumi: In South Africa we have these great laws but they are not being enforced. In response, we have seen a lot of women’s leadership around making sure that the voices of women who are sexually violated are heard. There are a lot of women who are standing up and doing advocacy and activism work and it is quite encouraging to see that those voices are not dying down. Because you find with so many of the families we work with, people are so numb that they shrug and prefer to talk about something else. Women’s voices keep reminding communities that even if we try to be in denial, this is what is happening.

We also do this in our counselling, even though it is so difficult. The moment a client talks about being in an abusive relationship, we ask questions about how they negotiate sex with their husband if they suspect that he is not being faithful to them. We ask, “Have you ever thought about HIV and AIDS,” or “Have you tested for HIV?” We realize that if we don’t ask the hard questions some people will just pretend it is not happening. But we can save lives by taking leadership as counsellors and as an organization. You can’t work with sexual violence without entering the world of HIV and AIDS – you just can’t divorce the two.

Photo by Neal Hicks/StudioFeed

A young mother at Reach Out Mbuya in Uganda. (Photo by Neal Hicks/StudioFeed)

Caring for the caregivers

Netty: I really think that dealing with HIV and sexual violence is the most difficult work you can do. It is difficult at a very personal level, and unfortunately there are not many support structures in place to take care of the caregiver. We have seen that, with our counsellors, it takes a toll. They have high blood pressure, and I think it is from trying to balance the personal and the professional. Our donors need to put a lot more resources into women’s wellness and taking care of the women at the frontlines who are the defenders of women’s rights. At Musasa we have started a programme we call “Heart, Mind and Body” in which we look at strategies for taking care of ourselves and our partners doing similar work.

Some of this work also comes with a lot of risk. For example, we run a women’s shelter. We have had perpetrators follow us to our shelters and even come to our offices. So we need to invest in women’s safety and security.

Mpumi: This is one of the things I am very passionate about: caring for caregivers. I often say that the work we do soils your innocence. You can never do this work and be the same person that you were before you did this work, because you look at the world, men, women and children with eyes full of horror. So it is very important that we take care of ourselves and have programmes within the organization that are mental health-based and that give us a chance to sing and laugh at the lighter side of the world. Caring for ourselves is non-negotiable – we really have to protect ourselves and make sure that we structure caring for ourselves into our personal lives and into the organization.

A key part of our work with grandmothers involves giving them a nurturing space. We make sure that when they come for their support group sessions, they get a space where they are cared for. And in doing so we also encourage them to make space for themselves, to be listened to, even to play sometimes! And when they bring a little baby to the group, we make sure the baby is cared for, even though she may need to go back to her granny from time to time. And that model is about them knowing that it is ok to take time, comfort, and even food for themselves. I might take for granted that I can say no or I can give myself a break, but they don’t have opportunities to do that. So we hope that women in our organization also model this care, and see that sometimes it is ok to give something to yourself, even though it is hard and a challenge.

Photo by Jennifer Dunn

Grandmothers celebrate at PEFO in Uganda. (Photo by Jennifer Dunn)

Final words

Mpumi: What is so exciting about these conversations is that they move us away from depicting women as victims and beneficiaries, and start acknowledging their resilience and their strength and their leadership. That’s exciting because we need their power to shine through – whether it’s caring for grannies, or the home-based care worker who travels for hours on end and never gives up. It’s the way we work with these women to affirm them as leaders.


Learn more

“The role of solidarity is so powerful in our lives, so powerful in our communities. Our dream is to develop a regional grassroots network of women to connect to each other, to value each other’s energy, and to continue to advocate widely so that the world may know the work they are doing.”

Mary Balikungeri, Director of the Rwanda Women’s Network (RWN), recently spoke with us about women as leaders and change-makers within Rwanda and beyond, and about RWN’s transformative work through the “Village of Hope.”


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