Feldgruppe
Regaining dignity

“How did you like it?” the support group leader asked me. He was young, about 24, with a lean smile and well built body. The frames for his glasses were light green, the same colour as his shirt. It looked expensive. It was somehow odd to consider that he was HIV positive.

“How did you like it?” the support group leader asked me. He was young, about 24, with a lean smile and well built body. The frames for his glasses were light green, the same colour as his shirt. It looked expensive. It was somehow odd to consider that he was HIV positive.

“It was inspiring,” I said.                                                    

“In which way?”

“Oh I don’t know. The kids performing, sharing, taking ownership.”

“Hmm?”

“I guess it’s about regaining dignity.”

He nodded. I could see that I had said the right thing. 

I’d visited Zvandiri’s support group for HIV positive youths. They have a concept of allowing the youths to lead the work that Alick (the mental health officer in the project) and I found very appealing.

We wanted to implement it in the MSF project and we had already been approached by the perfect candidate. Byson, a twenty-one year old HIV positive man attending our clinic, who had signalled his interest in volunteering for our support group.

“The little ones are mostly interested in food and having fun, but they listen to what is being said. The older ones need to develop skills and self-confidence. And they need to share.”

All said and done, we decided to dedicate the next support group to the theme, “positive choices in life”. Byson would be in charge of the older kids, talking about his passion for drawing, and how that led to his current profession as graphic designer. After that, the kids would be divided into groups and make drawings about positive choices in life. I would be in charge of the younger ones, doing some creative work and then a focus group discussion for my current project of improving the paediatric care at the project.

And so the day came, and it was a good turnout – more than forty kids were present. We were sitting on wooden benches in the big meeting room, bright light coming from the windows. Pictures made by the kids at the last meeting were plastered on the wall, portraying people coming to the clinic in ambulances because they hadn’t taken their pills. We were hoping that this meeting would take a more positive turn.

We started with a prayer and a hymn. I did my best to follow in Shona and I could see the kids peering at me with curiosity. We then did a presentation round, where everyone could state his/her name, age and interest. It surprised me, as always, how old the children were in spite of their short stature (perinatally infected children often have stunted growth).

“Is there anyone here who has never been to a support group before?” I asked. Five kids raised their hands. I asked them to come to the middle. I wanted to do something to greet them, but Edward, one of the more experienced support group attendees, was quicker than me. ‘Mauya’ he sang – welcome – while clapping his hands and dancing. The other kids joined in.

“Alright,” I said when they had finished. “Now I want all of the new ones to perform something, like a dance, a song or a poem.”

I wasn’t sure if this was the right thing to do. It would definitely not be the right thing to do in my own culture. But I had noticed that the people here weren’t so shy, and I had a feeling that the kids needed to be seen.

The first girl started by removing her shoes. She then started swinging her legs as though they were made of rubber. All the other kids shouted and applauded. The second performed a song. The third preferred not to face the group while singing and the fourth did a Michael Jackson-like moon dance.

Then it was the time for Byson to take the stage. He asked for a flipchart and a pen and drew a tree. He spoke in Shona, pointing to the tree, the roots, its branches. He asked questions, the youths raised their hands. I could feel the attention in the room.

“What is he saying?” I asked the counsellor sitting next to me.

“He is saying that your interests are like a tree. Sometimes there are termites in the trunk, but they can still grow if they have sunshine, water and roots.”

“Why is he pointing towards the branches?”

“He is asking what happens if you cut off half of the tree.  Some are saying that the tree will die, others that it will fall.”

“And the branches are the support systems around you?”

She nodded. “That is why you need many branches. For the tree to be balanced.”

Sadly I had to leave at this point for the little ones. I took them to another room, supplying them with painting, paper, pens and scissors. They were drawing little men, women, birds and other animals that they cut out and put on a string, almost like a Christmas tree decoration. They then used them as bracelets.

An hour later I returned to see how the older kids were doing. Byson was still standing in the middle, while another girl was speaking. She seemed animated, and I could sense a difference in how the other kids were listening to her. It was as though what she was saying mattered to them.

I edged closer to the counsellor, careful not to disturb.

“It’s past eleven. Shouldn’t they start the drawings now?”

“We can’t interrupt them. They are all sharing about good things they’ve done and things that are challenging.”

“Like what?”

“One guy wants do to music, but his parents are only interested in school. Another would like to be a military, but it’s not possible if you are HIV positive.”

I nodded. “That sounds good.”

“It is. Byson is saying that just like a tree takes time to grow, you have to start cultivating your interests early. For some, this seems to be a new thought.”

I shot a glance at Byson. At first glance he looked like a normal kid, but I could see that he was someone with passion, someone who wanted to transmit something. A leader.

I really wished I could stay, but I had to go back to the little ones. It was time for the focus group discussion. I asked the counsellor to check for their interest. To my disappointment, only one girl raised her hand. I asked the counsellor to insist, but she explained to me that the rest were quite happy and wanted to go out and play ball.

The counsellor and I took the girl to a different room and I took out the tape recorder.

“Chiri sei?” how are you?

“Chiri bvo.” I’m fine.

“Makore mangani?” how old are you?

“Ndine" eleven years.

She was pretty, with a square face and a sweet smile, but her eyes were not those of an eleven year old.

“How do you experience coming to the support group?”

The girl said something to the counsellor.

“She says it makes her happy. She always looks forward to coming here.”

“What do you like about it?”

“She likes being around the other kids, she doesn’t remember about the past, the bad memories don’t come up. She also forgets about her experiences at home.”

“Are you living with your family?”

“She’s saying that her father passed away when she was very young. She used to have two younger siblings, but they also died. Now she’s living with her mother, her step-father and three step-siblings.”

“What happened to your biological siblings?”

“She says she was very young and she couldn’t ask anybody about it.”

“So you don’t know how they died?”

“One of them got burnt and the other one choked on smoke.”

This didn’t sound very likely. Could they have died of HIV? And the parents tried to cover it up?

“When did you find out that you were HIV positive?”

“When she was eight she came here to the clinic with her mother. She had sores all over her body. After that she got tested and her mother told her that she was HIV positive but that she mustn’t tell anyone because it wouldn’t be good for her.”

“How did you feel about that?”

“She says it was painful, she was hurt. She asked her mum: ‘How did it come into me? How did this happen?’ but her mum wasn’t in the right space to answer, she couldn’t say anything.”

“Is there anyone else who knows?”

“She’s saying that her aunt knows, but she’s not allowed to talk about it with her step-father or her siblings. The church and the community don’t know about it.”   

“Are you ever treated differently than other children?”

The girl said something to the counsellor and I could see tears coming to her eyes.

“At her aunt’s place she is treated like any other kids, but at home, whenever the little ones gets gifts she never get gifts.”

“Oh come here,” I said, indicating the space next to me. The girl edged closer and I put an arm around her. She kept crying for a while, her face hidden in her hands.

“Are there any other ways that you feel that you are treated differently?”

“When her step-father comes home from work, she welcomes him, but he doesn’t give any sign of seeing her. But when her sister Julie welcomes him there’s a warm feeling and when the other siblings get money for school items, small amounts, she doesn’t get anything. “

“And how does that make you feel?”

“She says she doesn’t do anything, but sometimes she asks her sister for money, just a few Rands, but she always refuses to give it to her.”

“Have you ever told anyone about this before?”

She shook her head.

“How does it feel to talk about it?”

“She says it makes her feel better.”

I advised the girl to come back with her mother so that we could connect them with a social worker. The girl shook her head.

“She says her mum will be angry with her for telling the doctor.”

“Tell her to tell her mother that we just want to help.”

We finished the discussion and I went back to the older kids. It was past twelve and I was a bit concerned that they might already have finished. I needn’t have worried though. When I came in, a group of five were presenting their picture to the rest. It was a house and they were pointing at it, explaining in great detail about the different features.

“They are saying that just as a house, an interest needs a good foundation, a roof to protect it and windows for light,” the counsellor explained to me.

The next group had drawn a car.

“You need to look ahead, while still keeping your eyes at the rear windows.”

And so forth. At the end I asked to have a few minutes. I explained to them about the focus group discussions that would take place the following week and that we needed their help to make the clinic better. They had lots of questions, but in the end almost all of them wanted to come. I was touched by their enthusiasm.

“They’re saying that we should invite the caregivers to the support group meetings,” the counsellor said. “To let them see what they are doing.”

 “That’s a good idea. Let’s invite them for the next meeting and perform something for them.”

“They’re saying that they would need more time, just to rehearse.”

“Fair enough. The meeting in two months it is then.”

There had been a change among the teens that day. Before they had come, being sometimes bored, sometimes entertained, sometimes inspired. This time however, they had taken leadership. They were coming with ideas of their own and I could feel that they wanted to do something with this group. They were becoming strong.

Thinking about the little girl being treated like someone less worthy in her family, I somehow could sense how important this was to them. Her story is not unique to her. Most have been orphaned or lost people around them. Most have encountered both community and household stigma.

But as a group they were stronger. As a group they were regaining their dignity.