community reflections

*Singing* You must never give up, never give up, never give up, never give up. You must never, never, never, never, never; never, never, never give up. In times of sorrow, times of tragedy, times of sorrow, times of tragedy, you must never, never, never, never, never; never, never, never give up. *Stops singing*

Let me tell you how I got involved with the work of the Keiskamma Trust.

In 1994—it was the year of the first democratic elections in South Africa—my husband got an early pension and he came back to his home village of Hamburg, Eastern Cape. Hamburg is just over two hours’ drive from my birthplace, Fort Beaufort (now called KwaMaqoma). At the time he came back to Hamburg I was still working as a teaching assistant at a day care centre called  Aquarius Playschool, near the Traffic Department in Cape Town. My boss was a very nice lady called Desireé Stomberg and I was happy working there. I got on very well with Desireé and the children and the children’s parents.

For some years, I would go back and forth, back and forth between Cape Town and Hamburg because I was still working at the day care centre. One day, I came down to Hamburg on holiday and I didn’t know anybody in Hamburg besides my husband, Elliot. Now, the time I came down to Hamburg was around the same time that Carol Baker had moved to Hamburg and she had started an art project with the ladies in the community. When she first came to the village, she noticed plastic bags littering the place everywhere. She got ladies to collect these bags and I got involved. We would wash them, hang them, and put them in a black bag, and we would take them to Dr Baker’s house, and we would be paid R10 per bag. During that time, two ladies from Lesotho were invited by Dr Baker (where she met with them, I don’t know). These two ladies came to Hamburg and taught us how to cut these plastic bags and we were given crochet needles. We would make bags, mats and costumes.

In 2002, I came down to Hamburg again for a holiday. It was October, if I’m not mistaken. Now at this time Keiskamma Art Project, the embroidery project, was being launched. I took a walk down the hill to the art studio. While I was walking up and down the passage in the studio looking at the beautiful sewing done by people in the community, I met this white lady I had not seen in Hamburg before.

She said to me, ‘You don’t look familiar. Where are you from?’

I said to her, ‘I am from Hamburg. I live up there on the hill, near the nature reserve. But I work in Cape Town. I’m here on holiday.’

She smiled and said, ‘And what is your name?’

I said, ‘My name is Eunice Mangwane.’

Then she introduced herself and she wanted to know, ‘What are you doing in Cape Town, Eunice?’

I said to her, ‘I am a teaching assistant at a day care centre, Aquarius Playschool, and I am also involved in HIV/AIDS and TB workshops in my community.’

She took my hand and pulled me to the side. She said, ‘Goodness me.’ She said, ‘Come here, come here. Let us stand here on the side.’ She said, ‘You know, I have just got permission from the hospital in Nompumelelo to work as a doctor in the clinics around Peddie, but I have nobody who can interpret for me. I do not know Xhosa. Can you speak Xhosa?’

I said, ‘Yes.’

‘What other language can you speak?’

I said, ‘English and I am very fluent in Afrikaans.’

She said to me, ‘It would be so nice if you could join me. Would you like to come and stay here in Hamburg and work with me?’

I thought, ‘Join her?’ I said, ‘No, thank you, Dr Baker. I'm fine where I'm working. I've got no problems there.’

While we were having this conversation, down the corridor comes a gentleman, a lady and two children. She introduced us. The gentleman was John Brown, and he was with his wife and children. It turned out that these people were from England.

She pulled John to the side and said, ‘John, this lady is from Hamburg but she works in Cape Town.  I need somebody who can interpret for me when I go around these clinics. So, I am talking to her about the possibility of working together.’

Out of the blues, this gentleman says to me, ‘What is your name?’

I said, my name is Eunice Mangwane.’

Boldly he says, ‘Where do you stay? ‘

I told him where I stay, and he says, ‘Where's your husband?’

I said, ‘He's at home.’

He says, ‘We are going to come and visit you at your house tonight to discuss this further.’

I thought, what's this going on now? Come and visit me tonight at my house? A man from England, where Queen Elizabeth is? Yoh, I couldn't even look at all the artwork anymore. I was in such a hurry scurry. I walked up the hill and I found my husband at home. He was doing some painting and so on. And I said to him, ‘You know, I've met this lady. And this lady introduced me to this gentleman, and this gentleman is coming from England, and he says they are going to come and visit tonight. And he wants to speak to you.’

I'm telling you, I was turning the furniture in so many directions. I moved the table this way, then that way. And the chairs I put this way and that way, and I put clean covers on the couches and so on. Then I took off the tablecloth and I put on another tablecloth, and I thought, this is not so good either. And I took that tablecloth off and I tried another one.  I couldn’t believe that they were coming to visit me.

Just before the sun went down, two cars stopped outside. I went and met them at the gate and showed them in.

This gentleman was so bold.

‘Where's your husband?’ he asked.

I said, ‘He's inside here.’

Then I called my husband and I introduced my husband to him. I said to him, ‘John, this is Elliot. And Elliot, this is John.’

I offered them something to drink, and they had some tea and so on. Then John says to me, ‘Now you can talk to Carol, Eunice, and I'll talk to your husband.’

I was wondering, what is he going to talk to my husband about? I was quite curious, so my one ear was listening to Carol, and my other ear was listening to John. And from what I could hear John was twisting and turning my husband’s finger, trying to get my husband to agree that I must come and work in the rural clinics with Carol. The conversation didn’t take long. Then he turns to me and he says to me, ‘Look, Eunice, your husband agrees that you can come down from Cape Town to work here with Carol. I'm giving you a chance to think about this until Easter next year. Is it possible for you to leave where you are working and come and help the doctor? If you come and work for Carol after Easter, I'll pay your stipend.’

I was thinking, ‘Yoh! this is something else!’ I was so astonished, I didn’t know what to answer.

And off they went. I cornered my husband. I said, ‘And you, you have just agreed on something for me and you don't even know these people!  Now you have already agreed with them that I must come down here to work! You didn't even consult me!’

And he said, ‘You must come down. If this man is offering you a job, then you must come down, because I see no reason why you are still in Cape Town and I'm at home.’

The long and the short of it is, I went back to Aquarius Playschool. When I got there I thought, how am I going to tell Desireé about this? What am I going to say? Every morning I would come in and do my work, and not say anything to Desireé.

I was teaching, and there was another lady there doing the cleaning and the cooking. I told this lady about my situation.

She looked at me and she said, ‘Eunice, how are you going to tell Madam about this?’

I said, ‘Hey, I don't know. I don't know.’

And time went by and soon it was December school holidays, and I came back to Hamburg to be with my husband. Carol saw me and wanted to know, ‘So have you managed to sort yourself out in Cape Town?’

I said, ‘No.’

She says, ‘Why?

I said, ‘I don't know how to approach Desireé. Because why? I've got no problem with Desireé. So how am I going to say to her that I want to leave? Maybe she'll ask me what the reason is. What am I going to say?’

At any rate, the holiday finished and I had to go back to Cape Town. Now, time was running out because it was going to be the Easter weekend. Finally I found the courage. I said to Desireé, ‘Des, my husband wants me to go home.  My husband wants me to go home, because why? He's on early pension, as you know, and he feels that he can't stay alone at home. So I must come home.’  I didn't say anything about the offer of a job.

Desireé scratched her head and she said, ‘Oh, gee whizz, Eunice. Now what is going to happen?  How can I find someone as trustworthy as you to look after the keys and write down the fees when they come in, and make out the receipts. The children like you and the parents also like you. Now what am I going to do?’

I said ‘Des, I don't know, but this husband of mine is so foolish. He wants me to go home.’ Still,  I didn't mention anything about the offer.

And Des said to me, ‘Eunice, but you attend these workshops and so on in your spare time, and you are so involved in your community. What are you going to say to the people? Are you just going to leave them like that?’

And I said, ‘Des, let me tell you the truth. This is what actually happened.’ And I told her the whole story.

And you know what Des said to me? Des said to me, ‘Eunice, go for it. Because  since you've been attending these workshops and you've been working part-time at the clinic near you in Gugulethu, there's something, something that has changed in you.’

I said, ‘What is it?’

Des says, ‘I can't put my finger on it, but something has changed. Eunice, go for it. Go, you will be fine. You will be fine. You're going to work with that doctor. You will be fine. Go and help her. She needs help.’

I said, ‘Des, but we are working well together. I am happy with you here. How can I just go?’

She said, ‘Eunice, take the opportunity.’

I didn’t argue further. She put up a notice to let the school board and the parents and the children that I would be leaving. And early in March I was given a farewell.  Then I packed my things and came to stay in Hamburg with my husband.

When I arrived for work in Hamburg in 2004, people were dying. It was a disaster. And even though we were educating people, we were in a competition. We were running a race and we didn’t know who would win the race. As we all know, at that time our president was Thabo Mbeki, and our health minister was Mama Manto Tshabalala Msimang and they were refusing to roll out ARVs.  Now Dr Baker was caught in a battle, a battle between scientific knowledge that showed ARVs were effective in treating HIV/AIDS and Tshabalala’s idea that you could get better from HIV/AIDS just with the African potato and the beetroot and the garlic. Then there was also a gentleman on the way to East London near Twecu who sold a cure in a two-litre bottle. And guess who won the battle? The guy who would give people two-litre bottles of his cure would get diarrhoea and die at his house. Manto Tshabalala with her potato and beetroot and garlic did not work out. Dr Baker won the battle because she introduced ARVs in the community. We won the race.

As I’ve mentioned, Dr Baker at that time had just recently been given a permit from the health department allowing her to go and work within the different communities.  She was working at 47 clinics in 119 villages all around the Peddie area. I had to go around with Dr Baker to these clinics. Now you must remember, we had no ARVs, so the Baker-Hofmeyr family—I'm taking my hat off for that family—they had to buy ARVs from Forbes Pharmacy in East London and sacrifice so much. So, Dr Baker would buy them and we would distribute them to the different clinics and I would do my AIDS education in the passage while people were waiting for their name to be called.  I would talk about HIV/AIDS and about TB, and I would tell them about testing, and how if you test and you know your status, you can be put onto treatment, and so on and so on. We would usually leave home at five in the morning and visit two clinics a day, sometimes three clinics. Carol would buy lunch, and we would eat lunch on the road. The time we left would always depend on the distance to the clinics. If it was just one clinic we could leave at half past five.

At one of the clinics, I was walking up and down in the passage, doing my education, and the nursing sister called me into the office. I went into the office and she said to me, ‘Lady, I understand you are from Cape Town.’

I said, ‘Yes.’

She said to me, ‘Let me advise you, stop talking about HIV/AIDS here. People are not dying because of HIV/AIDS. They are dying because they are not doing their rituals the right and proper way. They are not slaughtering cows and goats, and that’s why they are dying.’

I said,’ Oh.’

She said, ‘Yes.’

I said, ‘OK, thank you, Sister.’ And I went back into the passage and I kept on talking with the ladies waiting there.

She called me again for the second time, and she said to me, ‘If you don't stop this, I will call the police to arrest you because you are you are breaking the rules. You've got no right to talk about HIV and AIDS here. It’s Cape Town people dying from AIDS, not these people.’

‘OK,’ I said. ‘OK, fine.’

Then Carol and I would go and work at another clinic, and that clinic would not be so impossible. As they got to know us, some of the clinics were accepting, and some of the clinics were not. I was also doing some education at the local churches, without Carol. When I sat in church, the person next to me would leave a space and not want to be close to me.

But I never stopped one bit, even when they threatened to arrest me and Dr Baker. That is why I sometimes say, this is why my hands are shaking like this, because it was more than ten thousand people’s files I had to write in by hand. Even now I am not computer literate. But at least the folders never have technical issues like computers and they are always there.

When I was doing outreach without Carol I was supposed to take a taxi but the taxis wouldn't stop for me, because I would be wearing my t-shirt with my red ribbon and I would be carrying my TB umbrella. The taxi would come past and I would call to the driver, ‘Stop, stop, stop!’ but he would just look the other way and drive on. I decided, if the taxis won't allow me in, I had better leave early in the morning. So I would leave at half past four with my bag, handouts, placards, backpack, umbrella and jersey, and I would walk. I would walk about four to five kilometres. I never used to wait for a lift. One evening, as I was coming back from Bell village, a taxi came past and slowed down. I could see the driver was looking at me in the rear view mirror. I closed my umbrella when I saw him slowing down and I started running, running, running in his direction. But then he started to pull off again.  I ran faster and I pulled the door handle. He had to stop then, and I got in.

He asked my clan name and then I asked him his (because in our culture you need to know who you are) and then he looked at my t-shirt and he said to me, ‘Oh yeah, you are Mama AIDS.’

I said, ‘Mama AIDS? What do you know about Mama AIDS?’

He said to me, ‘Oh, we heard about you at the taxi rank, from the manager. He said we must look out for this certain lady from Cape Town. She would be wearing a white t-shirt with the red ribbon, and she likes carrying an umbrella. And she's got this thing.’

They used to call it ‘this thing.’

I said, ‘Oh, what thing are you talking about?’

He said, ‘You know, this big thing that the sick people have, the sick people that are coming to your house. This thing that you are infecting people with. That's why they don't allow you into the taxis; because you will sit next to a person and you'll infect that person with HIV/AIDS.’

I said, ‘Is that the rumour?’

He said, ‘Yes, and it's a strong rumour. And I'm worried because if anybody should see you getting out of my vehicle, then that person won't want to get in, because you will leave this big thing on the seat. That hurts my business.’

As he dropped me on the corner of the road, I said to him, ‘I would like you to go for testing so that you can know your status. I know my status.’ Then I closed the door, and off I went.

Within the community, for about three years, the taxis wouldn’t stop to give me a lift. But you know, that guy now works as the school transport for children.

The first five patients that we had here in Hamburg were from different areas in Peddie and  they were staying in my house. I had four beds in the one room and I had one bed in the other room, and I would sleep with the one patient in the smaller room.

On a certain day, I heard a knock on the door. Here come four gentleman and they are holding something between both ends of this blanket and I didn’t know what it was. I thought, are they bringing a sheep to my house? What are these people bringing? They came in and they put this thing on the floor. When I looked, it was a human being.

The gentleman says, ‘You were at a clinic, and you spoke about acceptance, and that we should accept these people coming from different towns because they are here working, and they are infected by this thing. My aunt was at the clinic when you spoke, and she said we must bring this gentleman here.’

I was still about to ask questions and these gentlemen just left.

I asked the man what his name was, and he told me. I asked which village he was from, and he responded.

I said, ‘And now?’

And he said, ‘They don’t want me at home so my mother said I must be brought to you, and you must see what you can do with me.’

He couldn’t wash or swallow and he had bad diarrhoea. Carol had to buy him nappies and we had to wash him and feed him and take him to the clinic. I would put him in a wheelbarrow and push him and take him there. When people in the community saw the progress of the one gentleman, because they used to see me pushing him with a wheelbarrow, they started coming to my house and not the clinic. That is how they got to know about ARVs.  They didn’t want to go to the clinic when they got sick because they were scared that some kind of powder in the syringe would get into their blood when Dr Baker took their blood and, when the results came back, they would have HIV. So, they preferred to rather bring the people to me and the doctor would take blood at my house. Same doctor, same syringes, but they thought that at my house it would be fine because there was no powder at my house, only at the clinic. It was a whole deurmekaar story. Anyway, they trusted me, so they kept coming. So many cars would park here, you would think that there was some big party going on at my house. People would be bringing their relatives, their children, their husbands, their wives to come for testing.

I had to inform Dr Baker that this person is coming with their child or husband or wife or whoever. The doctor would draw the blood and bring the results back when they came back from East London. Then one night (people used to come at night so that nobody could see them) the sister who had said she would call the police to arrest us, that very same sister, brought her daughter as well. It was a crucial time.

We put them all on ARVs. Yes, I am telling you, of the five of them that were at my house, two died and three stayed alive. The three patients are still alive today. When I meet them, we scream and we cling to one another, and we laugh and talk about the stories of that time, how thin they were, and so on. We talk and talk, and we never stop talking.

When the people saw that three of the patients who were so sick had recovered, then they began to realise that the ARVs were working and there was no such thing as the powder. It was the same syringes; it was the same doctor; it was the same lady that did the education. So they started to go to the clinic for testing, and they would flock in at the clinic like anything. But the very sick patients of course stayed at my house because it was the only hospice at that time. And then Dr Baker said to me, ‘Eunice, your house is becoming too small. We must try to find a house here in Hamburg that we could renovate and make into a hospice.’ And so we turned an old double-storey house into a proper hospice and we called it Umtha Welanga, meaning Ray of Sunshine. I then worked at the hospice with the late Matron Zita, from Nompumelelo Hospital. Sadly, she became late last year. I was working with her, cooking and doing the soup kitchen. I was doing hand washing here at home as well because we had no washing machine. And then we employed other people to come and do the washing. And yoh, we were so busy. It was this and that, the cleaning, the laundry, the medication. We had to do everything.[1]

Meanwhile, at the Art Project, they made a huge and very beautiful piece, which is called the Keiskamma Altarpiece, a huge artwork that has doors that close and open. Myself and Carol and the lady who was the manager at the Art Project, Jackie Downs, were then invited to Toronto, Canada for the International AIDS Conference. (We were getting PWRDF funding from Canada.) Thabo Mbeki, who was our president at that time, and the Minister of Health, Manto Tshabalala Msimang, were also invited. It was a big thing. We were giving our speeches in a big, big hall. Although I disagreed strongly with Manto’s policies, I gave her respect because she's a doctor. I said she could go first and do her talk. So Manto went on stage and mostly promoted the African potato, garlic and beetroot idea. And then it was Keiskamma’s turn, and then Carol went up, and then Jackie Downs went up, and I went up last. Now to attract people's attention, I was wearing my African outfits. I didn’t wear anything westernised. I went on stage, and I started singing there and then, ‘You must never give up.’ The people were clapping hands and whistling and going on and on and on. And then I started off with my story about HIV/AIDS, how I got involved with Keiskamma Health Programme and so on. I am telling you, Manto walked out of there as fast as her legs would carry her. The students and other people were booing her loudly. The reason for this was that, by that time, overseas they had ARVs already. It was only in South Africa that we didn't had ARVs because of Government policy. If those people could have carried me and put me onto their shoulders, they would have done that. They were cheering for Keiskamma and couldn't shake our hands enough. They couldn't pull us this way, and they couldn't pull us that way. We made a hit.

And then we came back to South Africa. Very soon afterwards I got an invitation (this time I was the only one that was invited from the Keiskamma crew) to do a talk at UCLA  Faculty of Medicine in Los Angeles.  I was so scared because now I was travelling alone on a long flight; it was fine the time that I was travelling with Carol and Jackie but this felt like another thing altogether. Now that I had to travel alone, I knew I had to switch on my computer, my kop. Luckily my head is never down with technical issues. It's always there and it’s always working. Just as well my computer was wasn’t down. Professor David Gere (brother of the actor Richard Gere) was supposed to meet me at the airport but somehow he went to the wrong entrance and I had to get a taxi by myself to UCLA. It was quite something. Anyway, he is a very nice man and he was full of apologies and the talk was a success. I spoke about the South African Government’s policies on HIV/AIDS and about ARVs and the people who were getting better in our community.

Then I came back to South Africa. I’d been back in South Africa for hardly three weeks when I was invited to Seattle. Not very long after being invited to Seattle, I was invited to Chicago. And not too long after my Chicago visit, I was invited to Washington. And each time I went to these different cities, I did a presentation on HIV/AIDS in South Africa with the Altarpiece, which would always go on a boat two, three weeks before me. The time of my visit to Washington was just before the inauguration of Barack Obama. I saw that stage where Obama was going to do his speech. I will never forget it.

And when I used to write to Desireé Stofberg, I would tell her about the talks that I had to do about HIV/AIDS and how I was travelling across the world with the Altarpiece.  And then she said to me, ‘Eunice, I told you that you are going to make it.’

South Africa was the last country to be given the roll-out of ARVs because of our president and health minister. But we must never forget that, long before, Dr Baker came to Hamburg and changed the community’s mindset about HIV/AIDS. That is why, when you look at the one part of the Altarpiece, there are dark colours. But in the other part, the ladies sewing the artwork used bright colours. In this part, the fish are alive and the birds are chirping in the trees and Gaba, the guy with the big feet and the red dress, is going up and down the dunes singing and making patterns.

Happiness and health are coming back to Hamburg.

[1] Umtha Welanga also became very small, and we decided to move to where the Keiskamma Health Centre still is today, opposite the hall, next to the clinic. Our Canadian funding ended in 2015 and myself and Mama Zita couldn’t work at the Health Centre anymore. The focus there now is no longer HIV/AIDS.