All of the testimonies touch on aspects of communication in relation to living with HIV and participating in a social movement or support group. In describing their experience of learning about their diagnosis, counselling, coping and disclosure, every narrator describes a process of talking to someone, listening to someone, and the emotional responses involved.
Specifically in terms of social movements, communication is described as both a means to an end (a way of bringing people together, sharing information, etc) and an end in itself (the formation of the group or movement being perceived as a communication process in itself).
The key processes identified include referral and sharing of information about access to services between people; talking and being together as a way of addressing stigma and discrimination (internally as well as in the community); solidarity and a sense of belonging as a source of hope; collective problem-solving and suggestions about living with HIV (such as practical solutions about how to treat opportunistic infections); working together to support other people who are affected by HIV; and working together to prevent the spread of HIV and supporting people who are HIV negative to stay that way.
Just by bringing people together
ICW helps people to be able to speak about their status openly, to be able to live their lives positively, with no fear – just by bringing people together. And with ICW, knowing that it’s not only Namibian women, has given me the voice to speak up. It’s given me reason to move on and reach out to other people.
CJ (female), member of ICW, Namibia
Recruit more people
I do a lot of awareness-raising and I encourage people to speak out. I encourage people to speak out because you can get very sick if you carry this burden alone. I do talks at local schools and at functions, youth days and stuff like that, where I tell my life story to people to do the ABCs of HIV/AIDS. I do a lot of work in the community.
From a few years ago up until now things have drastically changed. And we need more people like me to make this thing work. Because if you don’t recruit more people and if people are not going to speak up, the virus is going to kill us, and we are not going to get a cure for the virus.
Gerald (male), member of TAC, South Africa
We can’t be open that much when there’s men around
Even though we are open to each other in the group, we can’t really be that open, especially when there’s men around. Sometimes, as a woman, maybe I have a problem with my reproductive health, but I can’t really talk about that in a support group. When there are men, it’s a bit embarrassing.
Maria (female), member of Lironga Eparu, Namibia
Coming to terms with a positive diagnosis
Good! Joining TAC did make a big change in my life. You know, before, I was – like – I am not good enough to do anything because I am HIV positive. But after I went for my first training, there was one lady who really motivated me a lot, always saying to me: “Sylvia, I know you can do that.” And I said to myself, if she says that I can do that, then I can overcome a lot of this.
Since then, I am more focused in life and I am more open about my status. I am going public about my status. I can talk in front of a whole group of people and in that way I think I can help people who are HIV positive, especially married couples.
Sylvia (female), member of TAC, South Africa
Talking brings peace
I do not know a lot about this movement. All I know is that I am still a member. We haven’t seen the good things yet, but we are hoping that in the near future good things will come.
One thing I have learnt is that when we meet it brings peace into my life. When I am at home, sometimes I think of many things which are not good for me, but when we come for support group meetings it relaxes my mind. We talk about our daily problems and it really brings peace to me. Even when I go back home I feel good.
Karolina (female), member of ICW, Namibia