How parents can helpLiving with AIDS Programme 142
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KHOPOTSO BODIBE: For Bongiwe the reaction that she often gets from her parents each time she talks about HIV is the main reason why she has kept her infection a secret from her parents. She finds it difficult that they cannot even make time to hear her out.
BONIGIWE: As I grew up things used to happen to me and my parents used to support me. They would sit down with me and tell me that we’ve been there, we’ve been young like you, we understand, don’t run away from us. But now with HIV/AIDS they don’t even get that time of knowing it. The only thing that I can hear there is: as you get it you have to die where you got it. You mustn’t come home with that thing. You bring an embarrassment to the family. What is the community going to say about this thing? We are not ready for you to die like that here’¦ I wish that you will know that it’s me. I’m not sick. I’m still your daughter. It can heal me a lot. I know that for you to have parents means a lot. Parents will be there no matter what.
KB: Sibongile Mazibuko is the mother of newspaper columnist, Lucky Mazibuko, who has been living with HIV for the last 11 years. She is also the advocacy officer for a support programme for parents of children infected with HIV in Johannesburg, Parents for AIDS Action. She says Bongiwe’s fear that her parents might reject her is a real problem faced by many young people who are living with HIV.
SIBONGILE MAZIBUKO: We come across a whole lot of children who are saying I would love to talk to my mother, but I cannot: because of the nasty comments that we always say when we are at home watching TV or talking to neighbours or talking to friends. You are sitting with this child here. You don’t know whether she’s HIV positive or not and you are not even thinking when you are commenting. You are saying if someone gets positive here, this is how I will react. And that child knows exactly long before she says anything to you. She knows your reaction already’¦
KB: So, our language really plays a very important factor around HIV/AIDS?
MAZIBUKO: Yes’¦ not even as families. Even as friends, even when you are in a taxi or you are in a bus, I think we all need to be aware of the impact of what we say to people.
If I make very funny comments about HIV and AIDS I should be aware of the impact I that I may be creating to the person sitting next to me because that very person may be infected by HIV and AIDS. And my very comments could be destroying that person.
KB: Turning back to Bongiwe’s case, I asked maS’bongile how best Bongiwe can get through to her parents.
MAZIBUKO: Since that she’s failed to reach out to her parents, I think that she needs to get someone that she can relate better to: an aunt, a cousin, or someone that is quite close to the family and say, please go to my parents and tell them that I’m HIV positive, because personally I think’¦ she finds it very difficult because she knows exactly what will come out of that’¦It is a pity that they are in Port Elizabeth, otherwise if she was around Gauteng we’d definitely try to help her in that respect.
KB: MaS’bongile, from a very personal point of view, if you’d share with other parents who have children who are infected what can you say to support them, to encourage them to keep on keeping on and live and let their children live?
MAZIBUKO: Well, firstly, we need to talk with our children because I personally think that that’s where the problem starts. Culturally, we are not a people who would talk to their children. But I think now we all know that there is HIV/AIDS, we need to sit down and talk to our children… The second one is that whatever information one has on HIV and AIDS we need to share the information as parents. Once you know what HIV and AIDS is, then that goes a very long way’¦ It’s very easy for me to talk to my child because I just said to myself the most important person here is my child, not my neighbour, not my sister, not my cousin. But my child that has presented that Ma, I have HIV and AIDS. And then I said to myself: How do I help this young man in front of me? And then I went out and got information.
KB: Migesh Padayachee, Project Co-ordinator for Parents for AIDS Action, agrees that information is critical to assist parents in dealing with AIDS. She says new efforts to de-stigmatise the disease are needed.
MIGESH PADAYACHEE: What we find is that in terms of the media ‘ print and visual, it’s there. People listen to it, but for some reason it’s not filtering to the grass-roots level. We’re finding that what is required is a personal one-to-one human kind of approach, which is more effective, where people feel more comfortable, ‘¦and perhaps small groups.
KB: For Bongiwe and many other children infected with HIV ‘acceptance’ by their families is what they need. I asked maS’bongile what this ‘acceptance’ really means.
MAZIBUKO: As far as I’m concerned it’s not really about being accepted, but it’s knowing that I belong to this family. So, if you belong to a family I don’t see where acceptance comes in. I think what we need to create as families is solid ground: a ground that wouldn’t be shaken by HIV and AIDS.
I grew up in a family where both my parents never went to school, but whatever problems we’ve encountered we were always like pillars for one another’¦
I knew that I was accepted irrespective of the situation or the condition that I was at at that particular point. So, that is why sometimes I find it very strange when I say to a parent love your child and accept him for what he is’¦
Why do parents really need us to teach them about acceptance because it has been there all along? ‘¦Why allow HIV/AIDS to take away the family culture?
E-mail Khopotso Bodibe
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How parents can helpLiving with AIDS Programme 142
by Health-e News, Health-e News
September 12, 2003