Mary Carlson: Young Citizens in Tanzania Take Action Against the HIV/AIDS Epidemic
If given the opportunity, children and teenagers can be effective stakeholders in advancing local community health initiatives as has been the case with the Young Citizens Program in Tanzania. In the following interview with Stephanie Marudas, Harvard University’s Mary Carlson shares her research experience working with young Tanzanians who have mobilized around the HIV/AIDS epidemic. She has written about her work in the January 2011 Annals volume, “The Child as Citizen.”Mary Carlson is an associate professor of psychiatry at Harvard Medical School and Children’s Hospital in Boston.
Stephanie Marudas: One of your main research interests is the development of citizenship skills in children and youth. Why is this important, that children assume the role as citizens early on in their lives, rather than later, let’s say, when they are officially an adult at eighteen?
Mary Carlson: Well, I think they have important perspectives to play very early in life. They are members of civil society. They are members of their neighborhoods, they are members of their schools and their places of worship and many other organizations in society; and yet, because they do not vote, often they are thought of as being sort of latent citizens, just sort of sitting around, waiting to have an opinion when they turn eighteen and to express that opinion in the ballot box. But there are many things that children worry about. Like in Tanzania, where we were working, they were worrying very much about HIV/AIDS and about the people that were sick and dying around them, but AIDS is not children’s talk; they are to be protected from that. So the experiences we had as we first went to Tanzania to think about talking about child citizenship in the context of the HIV/AIDS pandemic was that children wanted to know about AIDS; they did know a lot, adults did not know what children did know and a lot of what they knew was wrong, it was about stigma, it was about shame, it was about incorrect information about transmission. So particularly in that very tragic but also very volatile context of the HIV epidemic, we could see that citizenship was extraordinarily important and, as we started to talk to people in that context, they also realized that there was great promise in thinking about children as having an active and deliberative voice in what was happening to them and to their families and to their community.
SM: And you and your husband, Dr. Felton Earls, who is a special editor of this volume of The Annals, “Child As Citizen,” wrote about this in your article,“Adolescents As Deliberative Citizens: Building Health Competence in Local Communities.” Touching on the Young Citizens Program, take us back; how did you and Dr. Earls end up there and why.
MC: Well, we had visited Tanzania in 1974 and, it was because we were living in England at the time and it was possible to fly to Africa more easily than it is in the United States, so we decided to take that chance to go and see that continent that was so fascinating to us. We chose to go to Tanzania because, in terms of the independence of Tanzania, their first president, Julius Nyerere, had really dedicated himself and his country to being a unified country, where things like tribalism and religion and territorialism and all were really downplayed with people coming together, speaking a common language, speaking Swahili, sort of recognizing that self-reliance and cooperation and things of that sort were fundamental to development. So it was a very idealistic time in Africa, with all of these newly emerging nations and Tanzania was certainly the most idealistic of those at that time. So, we went to Tanzania and were fascinated by what we saw but also amazed by the level of development and how poor people were and what it really meant to be a developing country; it wasn’t like anything we had seen in places like Mexico. But, the longer we were there, the more we realized that the nature of their governance, the nature of their society, the way they embraced their language and embraced these idealistic goals really had a meaning for people of all ages. We went back again in 1986 and again in 2000 to visit. In 2000, we went back because the HIV/AIDS epidemic was so well known to health authorities and so well publicized. We were going back to sort of see how has this epidemic either slowed or stopped or reversed the progress that we could see Tanzania make from the time we went in 1974 to 1986. So we went thinking that the work we had done in Chicago around young citizens, the work we had started in Costa Rica around young citizens, that this could be a very important way to think about children in the face of the AIDS epidemic, rather than thinking about them merely as orphans or as vulnerable, which is really problematizing children and labeling children by their circumstances rather than thinking about children in terms of what capacities they have to make a difference in their lives and to be part of that idealistic nation to which they belong.
SM: Tell us about who the core group of children and youth were that you worked with. Who were they? How did they get involved? How old were they?
MC: When we first went to Tanzania, for the first two years, we would go just to do pilot studies and to look at different towns and different programs that existed, with particular interest in street children, particular interest in orphanages, because a lot of infants were being placed into institutions. We knew that orphanages were a terrible setting to put young children in. We had worked in Romania for three years prior to that and were very concerned that Tanzania would take a position of just adopting these simple ways of dealing with so-called problem children by institutionalizing them in the same way that people were institutionalizing street children. So we could see these two institutions building up in Tanzania and sort of being the warehouses for what happens for children that were left without families because of the AIDS epidemic. Not only did we want to work with children based on their strengths, but we wanted to work with children in the context of their community, so rather than thinking about institutions and thinking about child-saving approaches, we said that children are citizens in their neighborhoods. The context of HIV/AIDS is something, that the neighborhood is a context for thinking about HIV/AIDS and for learning about HIV/AIDS and that they could even play a role in educating around HIV/AIDS. So the intervention that we did was really based on selecting children at random from the most local, geopolitical units, the sort of street units that existed in this decentralized municipal structure that existed in Tanzania at this time. We went to a mid-sized city at the foot of Mount Kilimanjaro called Moshi, about one hundred fifty thousand people, and we studied the civic structure, the local structure of government there. We met people in local government. We talked to them about the idea of the role of children in the HIV/AIDS epidemic and also the consequences for children, found out what they were doing and said that we would be interested in working with local government and with the local medical school in terms of organizing small groups of children in communities to see what they came up with in terms of what their role could be around this epidemic. The design of the experiment emerged as what is called a randomized control trial that you survey the city, you study different social demographic, economic parameters of each of the neighborhoods and then we matched neighborhoods, so of the sixty geopolitical units that we refer to as neighborhoods, we took thirty of them and fifteen of them were matched pairs. In those matched pairs, we selected twenty-four children between the ages of ten and fourteen; they were randomly selected. Half of those neighborhoods were the experimental neighborhoods that got the intervention and the other half were the control neighborhoods. So in the end, we had over seven hundred children that were part of the intervention, but they were randomly selected so they would represent children between the ages of ten and fourteen; they would not just represent children who had parents who were sick from HIV or parents who did not have HIV or who had lost one or both parents, that they were representative of the city at large. The units, the children were selected from these units and these units became part of an experimental design that would allow us to say at the end of the intervention, whether or not the intervention benefited the children, benefited the communities and in what way or did it, in some way, was there some harm done by the intervention? So it is what is called an evidence-based approach to evaluating a community-based intervention.
SM: In your Annals article, you write about how one of the groups decided to hold HIV testing fairs, as they came around this issue and brainstormed about what they could do, because they cared about their communities being affected by the HIV/AIDS pandemic. How did that decision come about? What was that like to observe these children at work?
MC: Well, it is interesting. This actually came about after the full randomized control trial was over, because, in this trial, the first fifteen communities were the intervention communities and then at the end of that sort of eight-month period of the intervention, we did an assessment of health and attitudes of children and their caregivers as well as their communities, and these were on surveys that we had also done before the experiment began, so we had baseline measures and then post-intervention measures. But because we could see the intervention was working, we then turned to the fifteen control neighborhoods and said, “This is effective and you have served in the experiment up until now, and now it is your turn to have the intervention.” So then we mounted the intervention in the remaining fifteen neighborhoods and in the other fifteen neighborhoods, those young citizens worked with the control group young citizens as they learned about the intervention and did the kinds of educational activities in the community that the first group had done. Now, when both groups had had the intervention, when we had done the sort of surveys and were now studying the analysis of the trial, these children were now ready to say, “Okay, we were young citizens for your study and we are no longer young citizens.” They started coming back to our offices and saying, you know, “This cannot be over. This worked and it has got to keep going.” And parents started saying the same things and community leaders started saying the same thing. In no way did we sort of intend to abandon it, but we did not know sort of exactly, you know, we were funded by the National Institutes of Mental Health to do an experiment and the experiment was over, and now it was up to us to, how do we work together with these young citizens in their community to lead to a sustainable phase? One of the things the young citizens have been saying since the very first groups started working in their communities was, when they go out and do skits and educate about the virus and educate about what is HIV testing, what is the treatment for HIV and what are the social origins and social consequences of HIV/AIDS, all of this kind of educational work they were doing, at the end of their community engagements, citizens would come to them and say, “Why do you get us all excited and all enthusiastic about testing and treatment and all and then you do not let us get tested?” And the young citizens and the facilitators would say, “Well, you know, we do not do testing. We are about community mobilization.” And they said, “Well, but we want to be tested. You have gotten us aroused now. You have gotten us informed and we are aroused and we want to look at our health. We want to know what our status is.” And then we would hand out pieces of paper saying, “Well, you can go to this hospital or this clinic or this NGO.” And they would say, “But we do not want to go there. This is about our community. You have come to us.” So it was actually the community that started saying to the young citizens that we need to start doing testing and we would say, “Well, we cannot do testing; that is not the kind of thing we do.” So, there was this sort of way that the children were way out in front of us in terms of anticipating what might happen. As the program wound down and the sort of experimental and evaluation parts finished, that is when we had the time and the staff had the time to really start contacting the health officials, who knew all about the program but were not ready to sort of become full collaborators in the program. That is when the children said, “Look, we want to do this in the community. We want people who do voluntary counseling and testing to come into the community.” And many of them, particularly the NGOs, would say, “Well, we believe in strict confidentiality. People are stigmatized. They will not come out. We will not do testing in the communities.” We meant do testing in school classrooms or in buildings; we did not mean to do it out in front of the public. But it meant bring the testing facilities, which are easily transported, to the community. So the city and the sort of government clinics were much more willing to start participating in that way and then, finally, the NGOs and the private clinics became more willing. But what happened was that a number of counselors would come into the community, the children would do their skits and their educational activities. They would go around beforehand with loudspeakers, telling them they were going to be in the community with testing and with our educational program on such-and-such a day and at such-and-such a time. So, the very first fair, we were really apprehensive because half of the people, half of the staff and half of the voluntary counselors said, “You are doing all of this preparation, all of this publicity. But you know what, nobody is going to show up.” That is what half the people said and half our staff sort of thought that, and the other half of us were saying, “No, it is going to be great. It is going to be loads of people.” Well, it turned out that the second half of us were correct, that the counselors all got situated and set up in these various rooms around a big marketplace and people started coming out. It was shocking for even those of us who believed it. And it was shocking particularly because the men were coming out; it is usually the women who are tested and tested usually around when they get pregnant or are close to delivery, unfortunately, too late in gestation, or it is sort of young people who know they have been involved in high-risk behavior and are worried they might have had casual sex and that person might have been infected. But to start to see whole families come out, and start to see grandmothers come out to be tested and sort of say it was because of solidarity that they wanted to show the community that they were not afraid of being tested and that they realized that testing was something that was crucial for everyone to know and everyone to show that we all cared about the disease and that we would all do what we could to control it. So, it was really for the young citizens and, for those of us who believed in it, it was like a dream and the people lined up and lined up and went home and got other people and brought family members and called out to their friends, “Come over here, get in line.” And the idea of confidentiality and stigma just sort of broke down at that point, that it was a public activity. It was fantastic and they repeated it every time that they could organize a fair in a new community, the same sort of thing was seen, that it was a mass outpouring of enthusiasm. It was a joyful kind of setting of people, the young citizens singing songs about HIV prevention and all. It was festive. It was not this sort of vision you have of Africa, with its diseased people and its vulnerability and the dying and moaning and things of this sort that somehow seem to be what journalists like to portray or what readers sort of like to read. This was a joyous affair where the community participated and it served a very important role of sort of finding out who it was that was infected so they could be tested, I mean, that they could be treated. We cannot take any credit; we can say we came along sort of reluctantly but on the side of optimism and we were completely overwhelmed by how wonderful it was.
SM: So all of this, in a lot of ways, was the result of these children and youth tapping what you describe in your Annals article, agency, capability that citizenship endows them with.
MC: That is right. Amartya Sen’s capability theory is about what do you want to be and what do you want to do. In the first sessions of working with these young people, we talked about them being a citizen and do they think they could be a citizen and did they want to be a citizen and if they did, what would they be and do, and how would they do it. It is sort of amazing that you have a session for two or three hours with a child on a Saturday and the next time they come back and you refer to them as children or students and they look at you with this kind of “excuse me, I am not a child, I am a citizen.” It is a kind of transformational thing that, by just sort of having that label or designation and being able to think of themselves in that way, a lot of the work is really done in the first sessions, because they think of themselves in that way, that they want to be a citizen, they can do what citizens do and that that capability really builds from that initial feeling that, “Hey, I can do that. I can be that.” And yet, capability also is grounded in the context of what opportunities are there, so the community, the local authorities, the families, the teachers, the people in the community have to also accept children taking that status; they cannot ridicule them or say, “that is silly,” or they do not know what they are talking about, they cannot do that, it is inappropriate, it is naughty, it is disrespectful. If those sorts of things happen, then the context for capability would sort of trump the development of the capacity that children actually have. But the children worked in the community in such a way that they acted out about AIDS, they told them what a virus was, they told them about the immune system, they acted out how the virus comes into the blood stream and how the soldiers of the immune system, the different white blood cells come out and try to attack and control the virus and how the virus then ends up attacking the immune system. And they started out in this very educational way of really teaching facts to the community, so it was from that basis that, first of all, they were thinking they could be citizens, they could be educators, they could learn and teach about biology, and then the community seeing this and being amazed and delighted and so proud of their children, not sort of saying that is inappropriate, that is adult talk you know that is disrespectful, that is a sexually transmitted disease that is inappropriate, that is sinful to talk about in public, it is stigmatized. I mean, none of those things that a naysayer might think would have happened, happened. So you have to at the same time give credit to the adults, that they were willing to listen and willing to have open minds to the fact that children could be HIV educators and they could be responsible citizens and that their motivation was a very sincere motivation to try to work with the community to do what they could do together to control the epidemic.
SM: From keeping in touch there, have you heard about any of these young people who are still involved? Have you heard any anecdotes about what these children are up to now?
MC: We have more than anecdotes because, what is this, 2011? You know, the intervention sort of, the formal part of the intervention was over in the middle of 2006; the first health fair was in the early part of 2007 and we did health fairs in 2008, 2009. We continued to hold sessions. We have been sort of searching for funds here and there to keep this program going. We have continued to fund the facilitators and the only cost of the program is for the facilitators and for our one vehicle that allows us to move around from community to community. The young citizens have never been paid; they have never asked to be paid. The incentive is the work they do, the skills they learn, the good they feel they are doing for their community. So keeping the program going is really very, very inexpensive, so we have managed to do it. But when you say “Are we in touch with them?” How about three to four hours a day on Internet, five days a week, continuously since 2007. I mean, we continue to work with them. Because as they grew older and older, wonderful things were happening; I mean, they went from primary school, because they were in their last years of primary school when we started, and many of them are now at the age of voting. They are as old as eighteen and nineteen. Many of them got into secondary school, which is very difficult in Tanzania, because there is only space for ten percent of the primary school children to go on to secondary school. Many of the young citizens did, they won prizes in terms of writing essays on HIV/AIDS and they have excelled in many ways. They continue to organize fairs and then, as they were starting to be older and going away to college or moving to other cities, maybe to get married or to work or whatever, the ones who remained said, “We have to train a new generation.” So what has happened now is that a number of these young citizens have been the facilitators along with our original facilitators to train new groups of young citizens in their communities and now they are working on malaria as well as HIV/AIDS. But in the time in between, they were active continuously; they still had sessions. Then there was an AIDS day, they would be asked by all of the local and regional authorities to come out and sort of help to organize AIDS day. They would be in the community when it was the Day of the African Child. They would show up whenever there was any kind of mobilization around HIV/AIDS. They would be there to participate. They met the American ambassador, the new American ambassador when he first came a year ago and they performed for him and engaged him in a lot of their activities. They hosted the Gates Foundation; they hosted 150 scientists from around the world that are Gates-funded researchers to come and participate with them in the skits that they do on malaria and HIV. So they have been extremely active. You know, it is like, once you work with a community and work with children like that, there is no turning back and so now, we are working on the second generation. The work on malaria is turning out to be as important as the work on HIV/AIDS because it is a major killer of children under five. So they are just about to start doing skits on malaria and starting to activate the community around malaria control. It is not like we still have 700 children that we are working with all the time; the numbers are fewer, but we now have these two communities that have new young citizens groups and one of them now is outside the municipality, it is in a rural area so we can show that these programs can be developed and that the rural communities that are more isolated can also find that these are good programs to be happening.
SM: Here we have perhaps what we could call a success story; and still, what are obstacles that remain in the way of children being able to tap their citizenship?
MC: In terms of what we see as the obstacles, how do we incorporate the Young Citizens Program into the structure of the municipality? We now have a very close relationship with the district medical officer, who is the chief of all medical services and the person important in setting policy and carrying out policy in this community of Moshi. We are working with the district medical officer from Moshi rural areas, where our other new group is, so we are working with the medical officials. We have also worked with the structure from the municipal director and the rural director to all of the elected officials and they are all enthusiastic, but the question is how do we sustain the program without changing lives? So now, it is not that the Convention on the Rights of the Child has not been signed. It was one of the first things done after Tanzania became independent was to ratify the Convention on the Rights of the Child. So, the Convention is ratified and it is also well known in Tanzania and it is appreciated. But in order to have children serve in certain capacities, like in health committees, community health committees or serve in certain capacities, like in the municipal council or the rural councils or whatever, where these children can play a very important role, to not necessarily run for political office or be a representative, but in order that these children’s groups, which are really the energy and the hope and the wisdom of a lot of the community activities, in order that they can sort of serve in that way, there is going to have to be some sort of legislative acceptance of this. Tanzania has moved, like a lot of developing countries, toward decentralization, so that much, much more of the decision-making and the funding is going on at local levels, so it is a good time to try to think, as you decentralize budgets and power to local areas, how do you start to develop structures that allow children to be part of the thinking and part of the action at the local level because decentralized government expects that a lot of the activity will be done in conjunction with civil society, that there will be a lot of community participation in health, education, sanitation, social welfare, things of that sort. So, it is not that in Tanzania we have met sort of an impasse, that the political figures say, “We do not want that,” but they are sort of saying, “We cannot really…we do not exactly know how to incorporate them.” So, we are working on that and that is one of the things we are doing when we go next week, is to try to see how can they best work, particularly with health services and how can they be linked either to dispensaries or health centers or whatever. The other part is that it does require funding, because there has to be training, there has to be curricula, materials. There has to be somebody who, besides the previous generation of young citizens, who work to make sure that the more simplified form of the curriculum we have is actually presented to the new young citizens in a way that means they have all the advantages of the earlier generations. We are not sure if that can be incorporated completely in the schools, because schools are not community-based in many cases. In Tanzania, children go to schools outside their neighborhoods and teachers often come from outside of the community, so it cannot be the same kind of thing that the Young Citizens Program has been. But we are thinking that there are parts of the curriculum that could be included in the regular school curriculum, but then you are running into a huge bureaucracy that is a national curriculum, you know the Ministry of Education and all, so we want to try and avoid starting at the national level and having to spend years changing policy and curriculum there and try to find ways that, with decentralization, you can work more locally. So, I do not think there are major challenges in terms of anybody being against it; I think the challenge is figuring out how to do it and how to do it so that it does not get in the way of all of the functions that local government has, so it does not get in the way of what teachers have to do, but it keeps its localness, that it really is children beginning in their own residential neighborhoods to understand and then, as children do, they move further and further out from their home and their local neighborhood, and so as they do, these programs can start to incorporate issues that have a more regional or national flavor to them. But it really has to be a slow process. What everyone has been trying to say is, “Why do you not become an NGO? Why do you not become a non-governmental organization?” And to me, that is just not possible, because you cannot talk about citizenship and being a citizen and working in your local area with local authorities and stress your identity as being non-government. I think that, for non-governmental organizations, and particularly for young citizens, that we have to think about how we can work to strengthen local governments and strengthen civil society, not to say that we are non-governmental. So, we have been very resistant to that, which means that a lot of funding that they could have gotten to operate on their own, they have not gotten. But we feel that we have to protect them from developing that kind of donor mentality that forms them as a non-governmental organization and then directs them to start to go out in sort of a charitable way, asking for people to contribute to their organization. That there is an inconsistency, I think, with that, so we have to continue to think, and it is a whole new area of government; there is nothing that is comparable that we know about, so it is still a laboratory and we are still working with them to encourage them to think more about how it can work, so it can continue.
SM: Having gone through what you have been through in Tanzania and seeing this program get off the ground, how has this shaped your experience as a researcher and how has it surprised you, perhaps, in the way that you want to go forward in your work?
MC: We went to Tanzania not saying, “Well, this is a very poor country, it is very remote from where we live. It does not have a lot of science and people do not have the kind of appreciation for science maybe that people in the United States do.” But we went there saying it is even more important that the science is rigorous, that people understand the principles of the science and why the science should be made rigorous. It is particularly important that the evaluation can show whether it works or not. It was great to find Tanzanian colleagues who said things like, “You know, we are a poor country. We cannot afford to invest in programs if we do not know that they work. We cannot do it just because they sound good.” And so, being evidence-based is particularly important for developing countries and people who are scientifically trained there will say that. They also realize that they expect that when we practice science there or medicine there, that we practice it with the same level of quality, the same level of commitment. So, in terms of our research skills we have even sharpened, if you will, our skills and sort of raised our standards and introduced new ways of assuring quality. The great thing is the community and the children and the local people that we worked with to do this research have come to expect that and they constantly remind us, you know, like are we really doing that as best we can, are we measuring this in the way we should. So, in terms of us as researchers, we are sort of willing to go into any setting with the understanding that, if we are going to do it and do it on a large scale, it has got to be evaluated. It is not fair to the children, it is not fair to the community, it is not fair to the government or the funders if we do not do it in the rigorous way that we have done things in the past and that we do not use a rigorous evaluation to show that it helps and that it does not do harm. So, one conversation we have been having lately is with some colleagues who are from Haiti and have run a wonderful organization in Haiti for many years prior to the earthquake, working with the children, we had a conversation with them and we are going to continue to have that conversation. But, you know, the thing is, what is wonderful is that they realize that what Haiti needs is not just the funding to rebuild, but here we are a year later and there is no government. There is no place for governance. There is not even informal local social control or local governance and children are sort of treated, like in the images that they were in Tanzania and Africa around HIV, that they are orphans and vulnerable and need to be rescued. So it is great to talk to people who are so much a part of a place like Haiti and are so involved in where Haiti is today and realize that this cannot be a question of non-governmental organizations coming in and rescuing their children, but it has got to be children working in the context of an emerging governing society, one that understands citizenship and understands the nature of democracy and that can be something that addresses health. And they also understand that, for it to be done, it has to be done with good scientific approaches. We are not going off and spending ten years in Haiti like we have in Tanzania, but we do not have to because it is the measurement, it is the theories of design and it is the curriculum and you find people who are understanding and are appreciative of that. It is a simple thing to transfer this kind of information to someplace else. I think the key to it is that once you have shown that children can do it, that here is one of the poorest countries in the world, Tanzania has one of the lowest standards of living in any country in the world, and they had a very, very serious HIV/AIDS epidemic as well as malaria as well as malnutrition, and yet you can activate children there to become the kind of young citizens and the kind of young microbiologists that, you know, that dazzled all the Gates Foundation researchers who came to spend two days with them. So, if they can do that without anything other than facilitators who had a curriculum that enabled them to recognize their opportunities and their potential capacities, if you can do that in Tanzania around a highly stigmatized sexually transmitted disease, you should be able to do it in any context and not without difficulties; it is not like rolling off a log, but it really is finding adults who are committed, local adults who are committed to it, who are not sort of doing it out of charity but are doing it because they are citizens of that country and they recognize that half their population who are those under eighteen are citizens and that there is a role for that half of their population to play. So we sort of see it, when you look at the women’s movement and the feminist movement that now everybody says, “Well, what about women? Is there a part for women? Or are women involved?” And I think that the next stage is really to start saying, “What about age? Who is involved? Are people seventeen involved? Sixteen? Fifteen? Fourteen?” And I think that, if one can develop the kind of sensitivity and the kind of, you know, social movement around the parameter of age that we have around gender, we have around ethnicity or religion, in order to get rid of those biases of excluding people from citizenry and from being part of the public sphere, that if we can get age and children on our minds the same way we have these other groups, it will be part of the social movement.
Mary Carlson: Young Citizens in Tanzania Take Action Against the HIV/AIDS Epidemic