Tina Rotariu
Executive Director, Health Aid Romania

The Interview was conducted in English and is mostly presented here verbatim, with one or two minor alterations for clarity.

Could you introduce yourself, and tell us the origins of the organisation you run?

My name is Tina Rotariu, and I’m executive director of Health Aid Romania. I’ve worked here for the past eleven years.

Health Aid Romania was established in 1996, after a long period when it was run under the umbrella of Health Aid UK. We registered as a sister organisation here in Romania, and continued the programs started by Health Aid UK in 1990.

There have been many changes - when we started to work with these children, there were different conditions. Even the mentality in Romania has changed – it was slow, but it changed. So the organisation has had to change policies – maybe not to change, but to adjust, to adapt, to new situations.

Our activities are based on answering the children’s needs. So when we took the children into our care, most of them were babies - so there were other needs at that time, and we didn’t know that we were going to have them for such a long time. The doctors in the hospital told us that we would have them only for a few weeks - and why bother taking them when they’ll just die, anyway?

Our answer then was, ok - let’s let them die with dignity, then. Not somewhere forgotten on a hospital bed.

We just said that it is important to change their life – even if it is for their last few days, it is important to feel the love and the care from people who really want to be with them. People who don’t consider them a big burden. People who really have something to offer. So we decided to go on with our project, not being stopped by people who were less optimistic than us.

In those moments people said that we are mad – and maybe we were, but it helped. Because now - just by looking at them, we can be sure that we did the right thing ten years ago.

Could you tell us who the children are, and how they come to be in your care?

Most of the children that we found in the hospital were abandoned at birth - in maternity hospitals - by their mothers.

…Some of their parents did not have the possibility to bring them up, or they’re single mothers and couldn’t go back with the baby because it [would scandalise] their village - it was a great shame to go back with a baby when you were a single mother. So they preferred to abandon the children in the hospital.

But these maternity hospitals, a few weeks after, would send the children to orphanages. Unfortunately, the standard of medical care in these places was very poor, and this is how these children got infected with HIV.

Otherwise - some of the children got taken to hospital for different problems, different diseases, and were contaminated with HIV through the re-use of needles. A percentage [were infected] through blood transfusions and poor medical practise.

After these children were found to be HIV positive, the orphanages decided to abandon them a second time. They didn’t want to accept them back into their institutions. This is how these children became patients of an infectious diseases hospital.

How can a hospital care - for years and years and years - for a large number of children? A hospital is a hospital. You can decorate it, you can paint it with beautiful pictures on the walls - but the child is still a patient there. The child is never able to develop properly.

Of course, we tried to educate them. We tried to improve the children’s life in the hospital as much as we could. But the real development, and the real change, came when these children left the hospital, got to these houses, socialised and integrated into the community.

How did you decide which children to transfer to your homes?

It wasn’t only Health Aid’s decision. The first question was the state of each child’s health, because we couldn’t take very sick children into our homes. Another criteria was - we take those children who are not visited by their parents, who have no contact at all with their families. Where there was no hope at all to encourage the family to take more responsibility for their children in the hospital. So these were the first children who came to live in our homes.

How did you come to work for Health Aid? Could you tell us about your early days?

I was working in a remedial school, and at the same time I was developing some programmes with Unicef. So when it was offered to me, this job with Health Aid Romania, I said no – because the title of the job was ‘administrator’. And when I heard this title, I said no way am I going to come and work as an administrator.

But the previous administrator actually told me that it’s only part of the time that I will work as an administrator - and the rest of the time I will see the children, I will interact with the children, so the children will still be part of my life, the way the other children were those years in the school. So that made me change my mind and accept the job.

…I got the job, and I was happy to start a project that was basically at the beginning. I felt quite stimulated by this, and I was very happy to develop the whole programme. It wasn’t easy. I mean… those days were quite difficult – because of the [national] mentality, because of the relationship with the people from the hospital – because of many things.

And I have to say that we didn’t have the medication for the children that we have today. And we learned to live with a fear in our hearts that tomorrow - maybe never comes for these children.

And we had to face, sometimes, funerals - when we had the job of organising funerals for the children who had passed away. And [because of prejudice and fear of HIV] it was even difficult to find a place in the graveyard - to find a coffin, to organise a decent funeral. We had to look to different people for support. [Some] started to help a little bit - we started to develop some contacts with people from the local authority – but in the first few years it was a nightmare when a child was dying.

In the hospital also, palliative care in these cases was [profoundly underdeveloped] - and the children died suffering more than they should - because there was no morphine, or special treatment for the last days of the children, who had great pains.

I had moments when I screamed, and I cried, and I said – ‘God, this is unfair, why do you do it to these children? What did we do to deserve this? Are we punished? With these children – to see how much these children suffer?’

I had to go to my priest and ask him – how can I cope with this? He said God has an answer to everything. My role is just to finish what I’ve started. And this is what I’m doing.

How did you cope with such emotional strain?

To be honest, from the very beginning I came to think in an optimistic way. I didn’t want to think at those moments… I just tried to cope as much as I could with every bad moment that came. I tried to think in a positive way and try to see some future for these children.

And of course, when these new medicines came to Romania, my hopes doubled - because I thought maybe this is a possibility. Maybe this is the first gate open to a new life, to a new kind of treatment for the children and – who knows? – maybe one day there will be a cure.

Without thinking this way you can’t cope - to be surrounded by these problems all the time. By the disease, by such a black future that these children will not survive – it’s impossible to go forward.

…As you can see in the houses, we saved the pictures of the children who passed away - we continue to speak about these children, to talk about the children, about their involvement in our lives – about our memories, how it was being together at the seaside, or in the mountains. So these children never disappeared from our hearts. They are still there.

Could you tell us about those new treatments? When did they arrive?

About five… no, about six years ago, a new programme came into Romania, and Dr P---- learned about it, and started to organise the first group of patients to get on this new therapy. And our group of children was one of the first to benefit from the new treatment.

I didn’t have great expectations, but it was the only thing that was available at the time, and we decided to go for it - we decided that we should try it, because we didn’t know anything else.

And at the same time we had ----- in the hospital, who was very, very sick. And at some moment he appeared to wake up from his coma, and he understood when Dr P---- told him about this new programme - and he just said yes – I’d like to try it.

In only a couple of weeks, ----- got so well - it was incredible. Everybody thought it was a miracle and maybe it was – at that moment it was a miracle, because nobody expected ----- to live.

And after that we noticed in all the children’s health there was a great improvement. And the doctors in the hospital learned more about this new therapy, and were able to establish different schemes of therapy for each child. And now all of the children are monitored for their medication.

[The rate of mortality was so much higher at the beginning] – not so much in our homes, but in the hospital - and we were still very involved in the hospital, so we knew the children there and we cared for every one of them. We used to get humanitarian aid from the hospital – single-use syringes, gloves and nappies and so on. So we could see the [hospitalised] children every day, and we were concerned about all the children – not only those who were living in our homes.

And this is why we created more and more homes. Every time we added a new house, we had a new group from the hospital to come and fill it.

So it was hard – it was harder because - every time we felt happy… …something came to shade our happiness. I don’t know - it was [an ever-present sense that] tomorrow it could be all gone.

So it was more difficult, it’s true. Now we don’t have these fears, and we know that the children have a future and we work for the future. Before this treatment appeared, [we spent a lot of time] preparing them for grief, for loss, for dying. Now we don’t look to these things any more.

How do the children cope with bereavement?

As I said, [when children have died] we try to keep their memories… we try to keep them alive in our memories. But some of the children feel the loss harder than other children, or us. Like M----, A----, still can’t cope with A----- missing, so they keep asking about going to the graveyard… they can’t accept this separation.

For the other children… as I said, some children cope better, and they find different answers for themselves. You know, in a way - they ask us for some answers, and they keep looking for other answers, and they [explain it] to themselves the way they can best.

I remember when one of the children thought that maybe he was better fed - and this is why he doesn’t die. This was the answer that he wanted to believe in. We try to give children all kinds of answers - depending on their ages, on their understanding - we continue to have special seminars with the house parents and with the children on these different topics.

Could you tell us about disclosing to their children their HIV status?

A few years ago, we decided to go for disclosure of the diagnosis… …I asked the children to come to the office. And I said this time we have a meeting with you, not with the house parents. So they felt important, coming to this office meeting.

And we sat around the round table and we started talking about their self-esteem, about their image. And I could see that their image of themselves was a bit different than how I saw them, or the way other people saw them. We could see that these children were very nice children, very pretty children, very healthy children - but I was surprised that the way they saw themselves was not a reflection in the mirror.

It was something… they described themselves as being cripple. So I was very shocked about that. And then we discussed about what the major problems were among them.

And the first problem they described was their abandonment. And we talked about their abandonment, why their parents didn’t want to keep them, why they decided to abandon them. And coming from this area, one child identified the fact that maybe there is a disease - and maybe it’s a problem with their disease.

So I just used this moment to ask - what disease are you talking about? And the children didn’t want to say the name of the disease. But they managed to spell it out by letters, and not say it in one word. They were so shy and afraid to talk about this disease. It was obvious that they knew about the disease, but they were afraid to discuss it with us.

So we discussed the disease, we discussed their treatment. And I confirmed yes, that [HIV/AIDS] was the disease we had had to deal with for so many years. That was the disease that had made their friends disappear. But the same disease can be seen in a different way today, and the treatment is available.

And I also told them that they are not a unique group in the world, having this disease. That there were other people. And they were absolutely surprised, amazed to hear… they just thought that they’re the only people in the world with this disease, and it’s right for the other people to segregate them. So they were shocked to hear that there are other children, on other continents, in Africa, even living in Romania but with their own families.

And we talked about this disease a little bit more, and we also promised that the doctor from the hospital would come and bring more information about it. At the end of the session we discussed their self-image again. And I could see that their self-esteem had changed a lot. After just a three or four hour session.

But after this time, when we talked, it was only the truth… …about whatever problem concerned them. And we gave them the right answers. And that changed them very much.

And one of the girls said to me - you know, we were talking about these things every time we went to our bedrooms, before we got to sleep. And we didn’t know how to put the question. We didn’t know if we would ever have an answer to all these questions. And they were so happy that we could talk about that.

And also they asked me if they can talk about these things with the house parents. And the reason they asked me this question… was very unique. They wanted to know - if they talk with the house parents about this subject, will they hurt them?

So that really impressed me. I said no, the house parents know about all these things. And you can be open with them.

They were just afraid that the house parents would suffer more, if they talked about their HIV status, about their disease. And I just wanted to reassure them that they could now speak openly.

But this led to another question from them – why is it only us that know about this reality, about our problem – why do the other children that we see in the clinic [children from biological families] know nothing about their disease?

I had to say that that was a decision of their parents, and they said ‘This is not right - we’re not stupid, we have to know the truth. We could see AIDS written on different posters in the hospital. We know we go there all the time for treatment – these children are just like us. They have a right to know’.

Unfortunately, not all parents share [the truth] with their children. In a way I could see how much respect we gained from our children after we told them the truth. And this is very important. If other parents would hear what I’m saying now - the best thing is to share the truth, to speak the truth to their children if their children suffer this disease. It is important to fight together...

How unusual is your organisation in Romania?

…There are only a few organisations that really work with hands-on care. Most of the charities, of the organisations in Romania, look at prevention - at organising national campaigns against different problems. From the very beginning, we cared for the children directly.

Could you talk about the administration of a project such as this?

This is a very good question, because instead of developing practical things with the children, we frequently have to spend our time writing papers after papers and making files after files - we have to concentrate maybe half of our time, just on making papers. This is the bureaucracy.

Maybe this bureaucracy can be found in other countries - I don’t know, but one thing I can be sure of is that it’s very difficult to cope with.

…The way it is today, it’s incredibly… a lot, it’s too much, and this makes the administration of the organisation larger. And unfortunately the donors don’t want to hear about admin costs. So from my point of view it’s very, very difficult to fulfil all these requests from the government. It’s very hard to find the money that will pay for the paper, the telephones, the fax machine, the toner of the Xerox machine – because every single day we have to photocopy papers and documents I don’t know how many times.

Because for every department – every state department – you need another file, and another file - it is really very complicated. And the people in the office have to concentrate on this paperwork more than on planning and the future of these children.

What kind of bureaucratic problems do you encounter?

I believe that everywhere, in every bureaucratic system that wants too much, there are big gaps. And some of our children don’t have the right documents and never had the right documents. Nobody bothered at the beginning with these children’s documents. When we took the children to live with us we had to accept these gaps.

And we’ve been working very hard - like detectives - to find any small contact with their families. We feel that it is important to create a relationship with their family – if it’s not possible with their parents, then with their extended family. They may have sisters and brothers or grandparents who would really like to see the children, or keep contact with them.

And on the other hand it is their right to have their own ID; their documents, their passports if it’s necessary. So we have to work on these issues. Our social workers have to run with ten feet everywhere - from one department to another.

Sometimes they had to stop at different pubs, to ask people ‘can you remember a family with this name?’ Because the police did not find these people, could not find their addresses, and we just received this piece of paper saying ‘sorry, we couldn’t find the family’. So that’s why we had to play detectives, to look for even the smallest contact.

Can you tell us about those parents you’ve tracked down? How have the children reacted in these cases?

This year, I think we had about four new contacts with families. And it’s so touching to see this, you know. Sometimes the children come to the office, because this is the place where we arrange these first meetings. They come with anger - saying I’m going to see my father, my mother, I’ll ask them, why did they abandon me? They really come with this anger.

By the time they get here, this anger slows down a bit. And when they see their parents - you can see many moments of silence, and tears of course. It’s very touching to be around these meetings. They simply have no words to say. Maybe in their own mind. They just can’t express anything. It will take a while.

Have any children returned to their parents? Do you try to arrange this?

Not from the beginning. It’s very difficult. You have to rebuild the relationship, and only after that - the parents may come up with this idea. …It takes time, it never happens like this [snaps fingers].

But we had some successes. We have two children who have been taken back by their natural families. And one child died after few years – but the child was so well cared for, and we continued to support the family. It’s just that the child had more diseases – it was not only HIV.

There is a child that has been taken home one year ago. She is very healthy, she feels very happy – and her family feels also very happy to rediscover her. And we continue to support that family also. With train tickets, to pay for them to come to their regular visit at the clinic… with extra nutritious food, and different supplies – we try to help them.

How do these meetings affect the house-parents, and their relationships with the children?

It’s very interesting how these relationships form, actually. Because it depends very much on the house parents. It depends very much on the children. It depends on the staff who’re around. It depends of the contact that the children can have with their natural family. The relationships are not always… [makes a flat gesture with her hands]. Sometimes there are ups and downs.

For example, one of our children met his father and brother, about six weeks ago. And after that he started to act in a different way. He started to change a lot. Against the house parents, against the other children in the house. So it was something new. We will see how that will develop in time.

-----, who left Cristi and Lavinia’s house, went to live with her family - but her gratitude to the house parents is still there. Every time she comes here, she can’t come without asking about the house parents or the children, and she always wants to go and visit them. It’s a big distance – they live 500 kilometres away from Bucharest – but still when they come, she wants to see the house – the children and the house parents. She was very fond of the house parents.

So it depends very much… we’ll see how the others go, how the others develop. M---- also had a meeting with her mother, but M---- didn’t pay attention to her mother very much. Maybe there is a bit of anger somewhere, and she cannot pass through this barrier. So in her case we have to work with her, to try to get her closer to her mother. If her mother wants her.

Where did the organisation find the foster parents?

Mostly the house parents were found in the hospital. When Health Aid UK decided to open an educational programme in Colentina Hospital, they employed new staff - educators, to work with the children. To help the children play, to help the children learn. And most of them worked in the hospital for a few years – two, three years. And when we started to set up these family homes, we asked them first if they’re interested in the job.

Here I think it was God’s help. Because we could have looked everywhere in the world for these people, but it’s so difficult to find such generosity. These people really gave up their lives, they changed their lives, and… stayed with these children all these years. Really, these children are a credit to the house parents.

It’s a way of living - I think – they don’t respect their holidays and weekends, because they don’t make any separation any more. They feel that this is their family, and if they plan to have a weekend off, they will take a child or two – or maybe all of them - with them. So we can’t call that a weekend off!

Cristi and Lavinia organised their wedding with the children. The children came to the church, and then all the other house-parents were invited to the wedding, which took place in Lita House. Mihai and Sorina also had their wedding in Garofita house, so we really are like a family. We try to help each other as much as we can. We are like a family with problems and… [laughs] good things also.

But one thing is absolutely sure. It’s very difficult to find people with such generosity. People who offered their lives to these children.

What were the parents doing before coming to the organisation?

Oh, they were very young people, you know? Very young people. Just at the time when they could form their own families, and have their own babies… Really it was a perfect age to start a family. But they didn’t have this experience. We didn’t look for that experience. We actually were looking for - their hearts. I don’t want to be pathetic, you know, but we really looked at what they felt for the children… …That was the criteria for admitting them as house parents.

Veronica told us that she was working at a salami shop before becoming a Health Aid house parent!

But Veronica has such a big heart. A very big heart. It didn’t matter where she worked before. We could all feel that she has a lot of love to give. And that she understands the situation of these children, and that she wants to help. So that was the most important thing for us.

And she had – as all the other parents did – she had her moment of crisis at the beginning. Because it’s not easy to adjust into the new situation. It’s hard to take the children and care for them, and be there every time they need you…

…So I remember there was a moment when she said ‘I just can’t cope with this job any more. You just take your children away and let me go.’ And I just let her go… for a wee while… and then she came back and said: ‘I can’t believe I said all those things, I can’t leave these girls, they are my girls - never come here to ask me to leave these girls because I will never leave them.’

So she decided to take the children into her own home. And she had just a one-bedroom apartment. She said it doesn’t matter. They are happy here. I don’t need any facilities from the organisation. I just want to see these girls happy. And she managed. Later of course the girls grew bigger – and some of them – I think ------ is even bigger than Veronica, now - so we needed to help with a bigger house. And they live in a bigger space now.

But they still remain a very united family. And she was so generous, that she decided to bring two more babies into the house, even though her health is not brilliant.

How do you fund the organisation?

Funding an organisation…. It must be hard for any organisation. It is very difficult for us - because we have nothing to sell. We have to fundraise by offering people - just ideals, and telling the people that we will do good things with their money, if they invest in an HIV positive child. And this is a difficult thing to do.

We have to look for funding continuously, otherwise we won’t be able to develop and continue our program. We started it so many years ago. We didn’t know it would last such a long time. But we think of these children - not as just numbers of children. We actually have forty-three destinies, and we have to work for each destiny, to work with every need of every child - so we just can’t give up.

Every year we have to look for new funding for next year. We never know that next year we will have the funding, and this is my personal nightmare. Because it’s… difficult is such a gentle word. Really it’s very, very hard to look for funding, and to find the funding for the next year. I think that God helps me to find those people who want to help the children, otherwise I don’t know how I cope. It is very, very hard.

Every house budget is between ten thousand and twenty thousand dollars - US dollars - depending of the size of the house, of the size of the group. So… it is very difficult to find all the resources, all the financial resources for every house, to make it function in the best standards.

How have you generated the money?

We tried all kinds of methods of fundraising. We tried selling raffle tickets in pubs… we tried to organise major fundraising events. We had some support from local companies, but still we needed to get through to people - to tell people that they should help these children. Because these children are Romanian children, and they cannot rely on foreign countries to come and help us forever. We really need to help our children also.

…It’s not always a simple thing to raise money. Yes, we went to public places, to bars and pubs, selling raffle tickets, organising different kinds of events - on St Patrick’s nights, or Easter nights. And we met all kinds of people. People who really wanted to help; people who were only curious to hear about our activities. People who were not interested at all – and we tried to make these people understand that we were fighting for the right cause.

So. Different contacts, different reactions, different results. Usually we were successful. And even if sometimes it’s humiliating - because there are people who say ‘why should I give money?’ People who don’t think you deserve help. So these people are able to put you in very humiliating situations. And I was not asking this money for myself…

So even if it’s not comfortable at that moment, I had to pass through these humiliations - to go forward and think – ‘anyway, I’m doing it for the right cause. The children will have more bananas tomorrow.’

What is the future for Health Aid Romania?

The story is not over, with the big children - with the grown up children - because from time to time we come to the hospital and we find new babies abandoned here. And we have to find an answer for these babies. …The local authorities… …knowing that our homes are around, they continue to ask for our help. It’s true now that we have this expertise to care for these children, to help them grow up, but it’s more and more difficult to accept somebody new into the homes, because we don’t have the funding. We can’t cover the costs of the nappies, or the powdered milk, because this is quite expensive here.

We continue to ask for help, from the private donors, from anybody who can understand this problem that we have. Our house-parents want to care for these children, are able to accept them. But still, they need the nutrition for the children, and they need the support – the general support from the organisation. It’s not easy to work with a new child… it creates a new dynamic, when another child - when a new baby comes into the home.

Then the social workers start to do the papers, the psychologist needs to come and look at the psychological needs, nutrition has to be set up, the treatment needs to be monitored very strictly, the other children have to accept the baby and learn how to help the baby, how to be around the baby, so it’s a whole lot of…

It’s like an engine, which starts to move, and if this engine doesn’t have oil – doesn’t have what we need, the right resources to keep these houses - then these children have no chance at all. The alternative is to be sent to a big institution, with hundreds of children, and not to be cared for in the right way.

Because as I said, the mentality is still there - where some people think that touching an HIV child can be contagious, and they’re afraid to offer the right care.

To continue the projects, the existing houses, we need to look for new sources every year. It is very hard to find money even for one house – about twelve thousand pounds a year… …We also try to fundraise for each child individually, so donors are invited to do that as well. Because the donors need to know that - every child is different. They have different needs. G---- wants to paint, to be an artist, so she needs paints - she needs materials. M---- wants to be an electrician – he needs some money, to teach him how to do that.

Every one of them wants to become something. If we just give them the basics - food, shelter - they will not grow. They will remain at the level where the child is in kindergarten, or maybe worse than that. That’s why I keep saying that every child is a destiny, and we have to treat every child like this.

It’s like you and I – we can’t be treated the same. I have my needs, and you have yours. For every one of us it’s the same. We have to look to the best interests of each child. But for that we need support. I can’t do it myself. A small group of people cannot solve forty-three destinies. We really need more friends. We really need more support from people.

What would happen to the children were Health Aid not around?

There isn’t a state system which can offer a family environment, and this kind of life that we offer to the children. The normal life. We visit some of the state institutions, and I have to say – there is a big difference. Our children have managed to get to high school. And the children of their age living in institutions - they can’t even read or write. Only few of them can write.

So it’s a big difference between the development of the children living in the houses, and the children living in institutions. If we think that we can create a future for the children living in the homes, then it’s very critical... it’s very hard to shape a future, for the children living in institutions today. We try to help some of those children also. And last year we made some space for two girls who have been very badly treated in one of the institutions.

And they made huge progress in this last year. But we still can see a big difference between these two girls, and the rest of the children who were with us ten years ago. It’s hard to imagine an alternative to Health Aid Romania. I don’t want to see the face of an institution. It’s the wrong place for children to live. No child should live in such an environment.

…The children need to have their own family, their own group, to act in a normal way, to be seen as normal children, not as numbers on beds or patients or – who knows how people think of them.

Can you tell us more about the cost of running the organisation?

In terms of running the houses - each house, with about six or eight children, needs about one thousand pounds a month to run it – that includes all the things for the children, and the running costs of the house – with a small percentage towards the administration and the staff salaries.

I – don’t know if it’s a lot or not for you, but this is the minimum that we need to function. The salaries that we give to our staff are the minimum salaries in our economy – so that we don’t pay tax on the salaries. We keep this as a minimum also because it’s very difficult to find the right resources. We know that the staff deserve more, because they gave up their lives to be with these children, to care for these children. It’s just that – it’s very difficult to find these resources. So, in a way, it’s a sacrifice given also by the house parents, the staff who stay with the children and care for them.

And what tax breaks are available to Health Aid as a charity here?

We don’t have many tax breaks. There is just one general rule - everybody who has the minimum salary doesn’t pay one sort of tax - but the rest of the taxes, like for the labour office, or medical insurance, have to be paid...
…Also the sponsorship law in Romania is quite poor and doesn’t encourage anybody to sponsor these kinds of activities.

Could you talk about the present situation regarding HIV in Romania?

After twelve, thirteen years, we can see some improvements in the public mentality - but we are also surprised to see that some people who should have the information, some people who should be leaders and informers for the other people, know nothing about HIV. And that’s why we feel very disappointed - because we find people like this even in the department of education, and it creates problems when we want to integrate the children into the state schools.

It’s not a general attitude, but in particular cases we face these problems. The group that lives in the area of D----- is not accepted to the state school. This is why we had to build our own facilities, so the children pretend to go to a normal school. They actually go to some portacabins, where teachers - who are paid by the department of education - come to [teach them], but this is not proper integration.

That’s why we have to develop other activities to socialise the children, to set up contacts in the neighbourhood - outside the home, in the community. We see a big difference between the children who can go to the state school and the children who can’t. Who are not accepted. This is why we continue to lobby for the children’s rights. We go to the department of education, we have asked Unicef, and the representative of EU navigation in Romania, to help with the
integration of HIV positive children.

There will be a national campaign next year, and we hope that more and more children will be accepted in schools and in the extended community.

What difficulties are presented by trying to maintain confidentiality about the children’s status?

Talking about confidentiality - it’s hard to achieve this aspect, because people ask questions and at some stage… …you can be put in the position where you have to lie about this HIV status. To lie, or to run away.

This is the case with a group of children who joined a club, a children’s club in Bucharest. They went there for almost one year. And they built up friendships and they were so happy. And the way they socialised with these children and their families was incredible. It was the first time when we could see major changes in the children’s social relationships.

And at some stage, some of the parents or some of the educators and trainers from that club asked the children to invite them and to visit their homes. So at this moment the children realised that if these people would come to visit them they would understand – they could learn from the people, from the neighbourhood, that they’re HIV positive.

And they preferred to stop these contacts. They were not prepared to share the truth with these people because they were afraid of their reactions. That’s a very sad story, because we wished that our children could continue their friendships - and it’s a sort of never-ending abandonment that they have suffered. From birth, then by the state departments that had to care for them; by the family who sometimes come up and then they disappear; by people or volunteers who come and stay with them for a week, or two, or a few months and then [also] disappear – it’s a series of abandonments. And also with friendships. It is hard for the children to live with this stigma.

So how has it been, trying to get the children accepted into state schools?

Last year for some of the children was the first - moment of reality, of how is it to be integrated into …a different kind of community.

And unfortunately somebody recognised one of our children – this was a woman who was the mother of another child at the same school. And she made a big scandal [a big scene] in front of the school - and tried to tell everybody else, the other parents, that they should not accept our children to enter the school.

That was a very hard punch they took in their chest. They were very disappointed. After that moment of happiness - which was the first day in school - this disappointment came.

So, we went to speak to the head-teacher, and we were surprised to see that she gave us so much support. It was the first head-teacher that ever gave us this kind of support.

It wasn’t easy [at first] – we came with all the information, and finally she understood, and helped us and told all the other teachers from the school to listen to what we had to say. And with time, the other teachers started to accept the children. So the other children accepted [them too].

But to make sure that they’re better integrated we asked the head teacher to let us organise a small show with our children, in front of the other pupils. That happened with the occasion of Christmas, when our children dressed up in beautiful costumes, danced on the stage in front of all the other children, and then shared some candies with the other pupils.

And in that moment everybody was surprised to see that a child who’s considered - a living dead body, y know? – is able to dance and be alive and be happy and share the smiles with everybody else. So that was a great achievement, I think, in changing the relationship.

But as I say, it was just because we had help from the head teacher. In the other schools we were not successful. Not everybody is the same. So it’s hard to change mentalities. We have a group of children in a village and it’s very interesting because these children are accepted into church in that village. But not in school. It’s the same community – they are accepted in church – they can kiss the icons – this is the custom – but they are not accepted to stay in the same school as the other children.

So again, we had to have separate facilities for these children to learn – to get the right education. That’s why we had to employ teachers, who come from outside and help them to fill the gaps they collected from all the years when they couldn’t go to school.

That being the case, what do you predict for them in the future?

At the age of 18… …there is no employment available for them. We have to create this. If we don’t create it, probably these children will never be able to get a job for somebody else - who knows? Maybe in a few years this situation will change. But the way it looks today - if a child is 18 today, and is HIV+ - they will not get any job at all. Although the child might be very healthy, and can work, and is able to do some jobs.

Also there are no social apartments [available] that the children could apply for.

We have to look to their future, to see what we can offer after they are 18. We are trying to divide some of the existing homes, and trying to transform some of the rooms into places where they can live independently. And then later – this is just a transition - we are trying to organise a real solution over the next two years – to have small social apartment, where these children can really live an independent life.

What I also think would be important to the children is that they should stick together even in the future. Because they have the same problem, and they need to have a common voice when the problems will affect them. They also need to support each other. I was thinking of an idea - to try to organise a ‘mini HAR’ – a Health Aid Romania for the children. So that all the skills that I have, and that my colleagues have, can be passed on to these children – little by little, to help them organise themselves. To speak about their rights. To help them learn how to ask for their rights, and to set up projects in the future.

Maybe in the future I won’t be here, or many of us will not be around – they need to have these skills in their own hands, and it would be a pity not to have them. We have a history of great achievement, even if we are such a small organisation, with so little funding. But all these experiences have to be handed over. These children are the best group who can take over our activity.

We will try to help as much as we can in the future, to live on their own, stand on their own feet. We are thinking also of different activities that can bring them some profit, [so that they can live independently]. But this is even harder in Romania. We’re a charity, and even companies - which set out to make profit – fail every day in Romania, and face all these problems.

It’s so difficult to plan, to have a strategic plan for one year. So it will be hard. Let’s hope that with the help of some friends - who always come. I don’t know from where. I don’t know who sent them. I don’t know how I meet these people every day. But I know that some people [we have yet to meet] will be our friend, and the children’s friend, and will help them.

What kind of work are you trying to organise for them?

What we try is to set up small workshops for the children, to teach them general skills. And to look at their hobbies – at their interests – and try to help them develop these skills.

We have some girls – Veronica’s girls – and some girls from the other houses, who really can do beautiful things with their hands. They can make small jewellery or paint icons – things like this. And I’m sure if we can find a way to support them then they can make some little money just by selling these objects.

For the boys also we need to improve some of their mechanical skills. Because they like these things. And we would like to organise a workshop just for them, where we can do some carpentry, or even to help the house fathers repair the cars…

…We hope that we will find those resources to help them develop. I think it’s very important - that if they know how to use a sewing machine, that they don’t need to buy this service from other people. I think it is important for them to know as many things as they can to do for themselves. I think it’s important to show other people that they can manage and that they are not a big weight on somebody’s shoulders. That the children can also do things and be good partners in our lives. And they are.

It’s important to show the other people that if we invest in these children there will be no problem.

What are the challenges you’re facing as the kids grow older?

…When we took the children we didn’t know anything about their future. We just saw that they need basic things – toys to play with, some good nutrition, good care, and a lot of love. A few years later, and the school age came - and we had to respond to these kinds of needs. We had to build our own facilities in order to provide the education to the children.

Later on we saw that these children are able to go forward, to go to the next level of education, to secondary school and now to high school. And the age when children go to high school is associated with puberty - with adolescence - and of course this is a major subject to cope with. So, just as we started to teach them how to use a tooth brush, or a soap, or something like this many years before - now we have to give them information about sex education, about all kinds of [subjects] - regarding to their HIV status and in general.

They need this kind of information on the one hand, and we have to work very hard with the house parents and the staff on the other hand, who care for the children. Because it is very difficult to be around teenagers. Some of the house parents felt a bit disappointed that the kids changed their attitude. It’s the teenage attitude - and of course we had to talk to the house parents first. And then we tried to improve a bit the relationship between the house parents and those children who became quite arrogant, those children who have problems and don’t know how to talk about these problems.

We need to stay very close to them until this period will disappear. Because we understand it’s a hard time for them – we have to learn to listen, and to look at them as we look at the other adults. And it’s quite hard because you see their faces and you remember them as children and you are tempted to treat them as children. But actually they are the new adults around you. It’s a delicate situation how to talk to the children. And this is what we want to improve at this moment in time. For us, it’s a change. For them it’s a big change.

How does the relationship work between the house parents and you all at the office? Are there ever disputes about the children and aspects of their care?

After so many years it’s not difficult any more, because we know each other so well. I learned how to talk to every one of them. And they learned some things about me. So I think the relationships between us are quite good. And these kinds of problems we don’t have. So I don’t have a problem going to say something new to the house parents. I know exactly how to let them know something.

I regret that I have to ask them so many things – I would like to one day go and announce one thing – now you have to go on holiday. But unfortunately I don’t have the resources. I can’t offer them what they deserve to get.

What other new issues are arising as the children become adolescents?

We have to be prepared for any surprise in handling the children’s problems. They come with new things now - because they built up new relationships in school, or in the neighbourhood, and at this age… …some subjects [arise] that can put us in difficult positions. We have to sit down and think about the answer or the encouragement that we have to give to the children.

We had problems with children who fell in love for the first time with other children, who didn’t know anything about these feelings. And this is dangerous - for our children who may feel rejected, or who may feel that their feelings are not shared only because of their HIV status; because they’re abandoned; because they don’t come from a normal family…

So it’s very important to know what kind of relationship to encourage, and what kind of relationship to try to discourage, in a way. Sometimes we have to organise special meetings with the house parents, with the psychologist, and discuss in a positive way, what would be the best thing? How should we approach this subject? And which is the plan to go well?

So probably, the house parents told you many stories, about these new relationships that the children started to form. I am very happy for every new relationship. But at the same time, I’m worried. Because I must make sure that the children will not be affected in a very bad way because of their new relationships. I have an obligation towards our children - and towards the other children.

That’s why it is important to discuss everything with the house parents, and with all the staff involved.

Were you surprised by anything that came up during the sex education workshop?

[This workshop, facilitated by British social-worker Lois Pollock – an interview with whom can also be read on this site – were conducted in mid-2004, when many of the children had reached 16. The workshop was intended to address not only the gaps in the children’s knowledge about sex and growing-up, but to correct any misinformation or problematic attitudes that the children might have picked up.]

Well, in a way I learned not to be very much surprised by the children, because they’ve surprised me so many times now that I’ve gotten used to it. But it’s interesting how I felt, when the children asked some questions that I never felt I could ask somebody [at their age].

…The trainer [Lois Pollock] knows the children, and was able to come so close to them. And I am very proud that they had the courage to speak out, to ask those questions in order to feel better about the subject.

Anyway, this seminar was a great need. A great need. We have thought about this workshop even from last year. It’s very difficult to find the resources [to organise such an event]. But because the trainer found ways to get funds, and to bring herself to Romania, we managed to make it happen.

And it was great for our kids. They really needed it so much. And for the house parents it was a blessing, because they tried to respond to these things - but they were blocked by their own their own education, by our own traditions. It’s very difficult to talk about sex here. Especially because you didn’t have a very open relationship with your own family here. So after this seminar I think that our children are much better prepared [for relationships] than any child in Romania. Because this is so hard to find – a family that speaks so openly about these things.

How has this job affected your life?

[Long Pause]

I started this job eleven years ago. And I didn’t know then that my life would change so much. I know that I want to do everything I can - and do it right… Maybe sometimes I ask too much from myself and other people. I don’t know why I want everything to be perfect. We can’t reach perfection. But we can be very close to it.

When I came to work with Health Aid, we had a few babies around, and they were so sweet… so, it was a job, I could still have my own life…

But as the years passed… …I got involved more and more in the family of Health Aid – I think - I can see now there is a spirit of Health Aid. And it’s important to keep it like this. The destiny of Health Aid is made of forty… maybe fifty destinies together. We have to take care of the children… and at the same time, the parents of the children. They’ve formed real families, and…

I just couldn’t think of another job, of other opportunities. I really don’t think of this. I’ve never read articles in the newspaper or on the internet about job opportunities – although my salary was very, very small - and remains very, very small. I am so busy - solving the next problem, and the next problem, [planning] for next month, and for next year, so - I never stop and think if I could do something else.

Probably this job fits me like a glove, and I feel I can do good things for people. I think that I can help - because everybody is always asking for my help. It means that I really [am needed].

And it’s true that sometimes I’ve had problems with my own family. Coming from my own daughter, who would say ‘you care for these children more than you ever cared for me’. Or my husband says, ‘are you able to organise a family holiday? Because you’re able to organise everybody’s family, but never ours’. So, yeah, I have some discussions at home, sometimes.

But – it’s a different job. I had jobs before. But this is very different, very different. To feel that you’re part of a community. It’s not like being a leader of a town hall, you know? I’m really a brick of a town hall. This is how I feel.

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