Thinking positive - It is only by listening to those most affected, that we can bring about real change. Ahead of World AIDS Day, Luisa Orza and Jennifer Gatsi Mallet report on a groundbreaking project bringing together parliamentarians and HIV positive women in Namibia.
The newly-formed Namibia Women's Health Network (NWHN) is remarkable in many ways. With a focus on health issues, and HIV in particular, twelve of the thirteen coordinating members are young women living with HIV. For HIV positive women in Namibia, meaningful political participation is, in many cases, an inaccessible goal. For young women – who traditionally defer to older women in matters of personal and political decision-making – living with HIV, the political arena is even harder to enter. Yet members of the NWHN have already had personal meetings with the Deputy Minister for Health, as well as other parliamentarians.
The personal to political
Networks can function as a bridge from the personal to the political, and the Namibia Women’s Health Network provides a perfect illustration of this. Practically, the coordinating committee, based in Windhoek, plans to engage with women in each of the twelve other regions of the country to represent local health issues affecting women and girls. The thirteen members of this central committee will have monthly meetings with parliamentarians at which they can also put the other regions’ issues on the table to be discussed. Personally, the women involved in the network report feeling a sense of solidarity and comfort from the other women; a freedom to talk about what are often considered taboo issues; a safe space to openly discuss their HIV positive status; and a sense of being valued for who they are. These are just some of the testimonies from NWHN members*:
"Meeting positive women, it’s meant a lot. It’s good to be in same situation, all being positive and living positively and fighting to a positive goal rather than just thinking about oneself." Jane
"It is something informal – social, share experiences. How are people doing? We have real life situations – you are supposed to be an activist but you are failing somewhere in your own personal relationships." Veronica
"When I was sick Jeni and two group members came and brought me fruit. And it really made me feel good. Even with family it is hard to ask people even to go and buy you apples." Agnes
"Being part of the committee and working with other positive women - it has made me realise that I am not alone and there are other people like me. It has been given me the courage to move on with life. I’ve made friends and I know who to go to if I have a problem. I am no longer shy and locked up in my own worlds and trying to suppress myself and my ideas. I am now open. It has released that inner person … I am no longer that stressed and oppressed." Gloria
Organising as a group rather than as individuals has opened up opportunities for training and capacity building, which has enhanced the women’s ability to analyse their personal experiences through a political rights framework:
"Really it changed me a lot as a woman living with HIV. I came up to know my rights and when someone violated me." Christina
"I learnt a lot of new stuff – especially how laws in Namibia are made … I go to hospital they have to treat me because the law says everyone has the right to treatment. I have the right to say I want to have children or I do not want to have children. It has opened my mind up - I have all these rights." Elizabeth
"I was one of those people that succumbed to men culturally that I was taught. Now I know that my body is my mine and I can make decisions about it whenever I want to." Gloria
And finally, these women have been able to take their collective, politicised experiences to an audience which has the power to create legislative change. Meeting with MPs has had an impact on two levels. Personally it has had an enormous effect on the women’s self esteem and sense of self worth, to feel that they were being listened to and had something to “teach” the parliamentarians. It also enabled them to frame their concerns as political issues, and have this reinforced by being taken seriously on the political level.
"We had a meeting last week with parliamentarians, with the Deputy Health Minister. We just went to say what we are doing and she has given us her support 100%." Jane
"...MPs are very busy people and we are privileged to have an hour with them ... We are putting the issue straight on the table." Veronica
"Meeting the Deputy Minister was very good for me because this time I got to see the minister face to face – I never met with the minister in my life. And she is listening to us and supporting us and encouraging us." Christina
A positive example
The Namibia Women’s Health Network has sprung out of a ground-breaking dialogue-building programme, the Parliamentarians for Women’s Health (PWH) project, that the International Community of Women Living with HIV and AIDS (ICW) and partners have been implementing over the last three years to link parliamentarians to communities, to enable them to learn from those most affected at ground level about the impact that HIV is having on women’s health.
In Namibia, a committed group of MPs have benefited from the programme in terms of having their eyes opened to the reality of what it means for an entire community, especially the women in that community, to be affected by HIV and AIDS, as well as other health issues. They are now ready to represent some of those issues in parliament, and in influencing policy and budgets:
"I saw the extreme suffering of the women, they have no shelter and no food, they have to hunt in the bush. The experience has made me promise myself: I will do something, I must do something." Honourable Ida Hoffman
"I promised to put forward a motion on the insurance industry, which is still discriminating against people with HIV, and I did this and 30 people in the house have responded to it." Honourable Elma Dienda
"Now when there is a debate on the Ministry of Health budget, I can say where we should scale up and where we shouldn’t … and now this comes from real knowledge I have and isn’t just from second-hand things I’ve heard."
Honourable Peya Mushalenga
A right to participate
Political participation is often touted as a right; an integral aspect of citizenship. In recent years, the involvement of people living with HIV (or other affected groups, in other kinds of development work) has been adopted as an obligation, a means of acquiring funding. Far less often is it viewed as a necessity by policy- and decision-makers, that without the participation of the people most affected, those creating programmes or policy to bring about change cannot possibly know how to do it most effectively. Even in NGO circles where participation and inclusion are buzz words, the involvement of women living with HIV is still more often than not treated as a “must do” from a political / rights perspective, rather than a genuine acknowledgement of the fact that women living with HIV bring a huge – and unique -wealth of experience and knowledge.
When it occurs, “participation” is offered like a treat, a bonus or a meal ticket – an all-expenses paid trip to New York, what more could a (poor, uneducated, marginalised, HIV-infected, female) person ask for? Rarely, if ever, do those creating the policy, holding the meeting, developing the programme, ask: what are your priorities? Where do you think we should start? What are the biggest challenges facing you at home? What do you think this is all about?. It was therefore a small but significant step for a group of Namibian parliamentarians to accompany ICW Project Officer Jeni Gatsi, a woman living with HIV, when she went to communities and met with groups of women, both living with HIV and not knowingly living with HIV, to ask these very questions. The MPs' reactions were telling:
"The woman who said 'I know who here slept with my husband last night' – she was speaking in her language, and the translator didn’t translate it for us because of embarrassment, but I understood and that really struck me. This is how HIV spreads, and everyone in the community knows about it, so education on HIV must not go through enough."
Honourable Elma Dienda,
"The health situation was much worse when you saw it on the ground than the Ministry of Health figures we had would imply, because those do not fully reflect reality." Honourable Elma Dienda,
"The assessments I attended exposed me to the real needs of people on the ground; I had read the statistics but I hadn’t been in touch with the real human feeling surrounding it beforehand." Honourable Peya Mushelenga
"We always misjudge the knowledge of women and communities; they actually have excellent ideas for how to heal themselves, whereas we always assume they have to go to the hospitals. They have an amazing capacity to take care of themselves." Honourable Ida Hoffman
Initiatives like this have a galvanising effect: these same parliamentarians are now expressing a desire that the dialogue continue; the Namibia Women’s Health Network receives invitations to meet with the parliamentary committee on health; women’s voices are now actively sought. Belonging to the committee has made a big difference to the lives of the women who run the network. If it survives, it will signify a small but real change for women living with HIV. Yet the work must go on. The PWH programme is drawing to a close, but the Namibia Women’s Health Network represents the future of the productive engagement between positive women and parliamentarians.
* All names of NWHN members have been changed