Sub-Saharan Africa: 13,700,000
Source: Newsweek, Vol. CXXXV, No. 3, 17 January 2000
By
I. Introduction
From 1995 to 1997 I worked as a Primary Education Teacher Trainer with the U.S. Peace Corps in Uganda, East Africa. My primary responsibilities were to serve as a tutor, supervisor, and facilitator for twenty-four primary school teachers and eight headteachers who were enrolled in a distance education program supported by USAID’s SUPER project (Support for Ugandan Primary Education Reform) and the Ugandan Ministry of Education and Sports’ (MoES) Teacher Development and Management System (TDMS). My secondary responsibilities included teaching an additional 550 untrained teachers during two-week long residential trainings held three times each year.
It was during one of these two-week long residential trainings at the Primary Teachers’ College (PTC) that a colleague and I approached the principal of the college and asked him if we could present a workshop on HIV/AIDS education and prevention. We were not experts in the field, and had relatively few resources to rely upon, yet we knew that this topic was of vital importance and made other workshop themes, such as learner-centered methodologies, pale in significance when compared to this issue of life and death. During the one year I had spent in Uganda up to that point, I had known several individuals who had died of AIDS-related complications, and I had also encountered much ignorance as to the causes of the disease.
With the principal’s blessing we presented twelve small-group sessions (40 student-teachers each) and two large-group plenary sessions (300 student-teachers each) on the causes of HIV/AIDS, methods of prevention, and a bit on living with HIV or with an HIV positive family member. At the conclusion of each session my colleague and I asked the student-teachers to write an anonymous question or comment on a piece of paper as part of the session evaluation. We were touched by the personal nature of the sessions, and were especially moved by the anonymous evaluations that we received at the end of the session. It brought tears to my eyes when I read of teachers who were HIV positive and were seeking very personal advice. I brought the comments home with me to the U.S. as a constant reminder of the realities of HIV/AIDS in Uganda and other African countries. In preparation for this paper I looked back at some of the comments and questions. Here are a few examples of the concerns and struggles that the teachers I worked with were confronted with:
As you can see, the issues around AIDS do not only deal with health, but also impact the religious, professional, psychological, familial, and societal roles of these individuals.
For the past few years, since my return from Uganda, I have carried with me a desire to research the impact of HIV/AIDS not only on adults, such as the teachers mentioned above, but also on children. The affect of HIV/AIDS on children, especially orphans, is just beginning to become a major concern amongst international aid organizations and non-governmental organizations (NGOs). Up until now, the primary concerns around AIDS have focused on education and prevention, as well as forecasting the economic impacts of the pandemic. Now, people are beginning to recognize that millions of AIDS-affected children have been traumatized and are in need of having their basic needs fulfilled. I hope that this paper will raise awareness of the challenges facing the African continent and the ‘invisible children’ whose fragile lives have already experienced more pain and crisis than many adults will ever go through.
Sub-Saharan Africa has been severely affected by HIV/AIDS. Of the estimated 16.3 million people who have died of AIDS in the past twenty years or so, 13.7 million of them have been in sub-Saharan Africa; 2.2.million died in 1998, alone (Newsweek, 2000, online). This accounts for 84 percent of all cumulative AIDS deaths worldwide. The figure below illustrates the devastation that AIDS has wreaked upon Africa, as compared to the rest of the world:
Source: Newsweek, Vol. CXXXV, No. 3, 17 January 2000
Although sub-Saharan Africa accounts for only 10 percent of the world’s population, it is home to approximately 23.3 million, or 70 percent, of all the adults and children infected with HIV throughout the world (UNAIDS, 2000, online). Some estimates put the number of infected Africans as high as 40 million (Gachuhi, 1999, p. iii). Recently published data by UNAIDS shows that seven out of ten newly-infected people are in Africa, and that 85 percent of AIDS-related deaths and 95 percent of AIDS orphans are also in Africa (UNAIDS, 2000, online).
The AIDS pandemic “is concentrated in the so-called ‘AIDS belt’ stretching from East through Central and Southern Africa, where infection rates are now between 20 and 30 percent of the sexually active population. The bulk of new AIDS cases are among young people, aged 15-25 and females are disproportionately affected” (Gachuhi, 1999, p. 1). Within the countries of Uganda, Ethiopia, Rwanda, Burundi, Tanzania, Kenya, Congo (formerly Zaire), Zambia, Botswana, Namibia, Zimbabwe, Malawi, Mozambique, Angola, Lesotho, Swaziland, and South Africa the AIDS pandemic is wiping out the health and educational gains that have been made over the past few decades. By 2010 it is projected that nine of these countries will have life expectancies of only 30 years or less, compared with 60 to 70 years without AIDS (Gachuhi, 1999, p. 1).
Children living in homes where AIDS has led to the sickness and/or death of loved ones endure numerous challenges. Often, we imagine orphans enduring their worst challenges after the death of their parents. However, with HIV/AIDS, the pre-orphan years, when loved ones become sick and grow increasingly frail, can be exceptionally traumatic, as well. The challenges such children endure may take place over many years, and can often go unnoticed by teachers and other adults.
Children who have experienced the death of a parent or sibling, regardless of the cause, have been exposed to many psychological challenges. However, the “specific constellation and intensity of problems facing families affected by HIV set this disease apart from all other contemporary health problems” (Bauman & Wiener, 1994, p. S1 in Geballe & Gruendel, 1998, p. 50). This section will explore five challenges of HIV/AIDS (adapted from Geballe & Gruendel, 1998, p. 50-53) that cause it to be so potentially devastating to the healthy social development of children affected by it.
Before we look at the challenges, however, we must first have an understanding of the meaning of healthy social development. In my opinion, which has been shaped by Ervin Staub’s book A Brighter Future: The Development of Caring, Non-Violent, and Optimally Functioning Children, healthy social development is the raising of children to become optimally functioning members within the social structures of a given culture. Staub (unpublished manuscript, Ch.1, p. 12) states that optimal human functioning
is not the same as a high level of effectiveness in achieving conventional forms of success. It refers, instead, to the fulfillment of basic, fundamental human needs which brings about the fulfillment of human and personal potentials. Becoming a caring person who responds to others’ needs, who is able to resolve conflict effectively and without violence, who is concerned with the welfare of community and is therefore a caring and responsible citizen, a person who is able to set goals and is effective in pursuing his or her own goals, goes a long way towards optimal functioning.
Uncertainty
Both before and after the death of a parent, an AIDS-affected child is exposed to a high degree of uncertainty. Unfortunately, it seems, the only thing that is certain is the eventual death of the loved one. Children are faced with many questions, which often are impossible to answer. Questions such as “When will the sickness strike again?”, “How long will it last?”, “How will we afford medicine if my father is unable to work?”, “Will my parent die?”, “What will happen to me and my siblings once they die?”, “Where will I live?”, and “Will I be able to go to school?” can lead to a feeling of lack of control in one’s life. Such uncertainties pose “great challenges to the secure psychological base essential to a child’s development of a healthy and functional personality” (Nagler, Adnopoz, & Forsyth, 1995 in Geballe & Gruendel, 1998, p. 51).
After the death of their parents, AIDS orphans continue to face enormous uncertainties. If they are living with extended family members, they may be uncertain about their role within the existing family, and how much of a burden they are placing upon the family. They may also be uncertain about their education, and whether the family will be able to pay the fees to send them to school. On the other extreme, some orphans either fall outside of the extended family safety net and end up as street children, or they become heads of households, where they are responsible for looking after their siblings and taking on the roles that their parents used to have. Such children often must face the everyday uncertainties of life on their own. They are expected to forego their childhood and to assume the responsibilities of adults, which may include caring for younger siblings, growing their own food, and engaging in income generating activities. Often, these young children are poorly prepared for their new adult roles. “In Namibia, children left with small livestock – chicken and goats – saw many of their animals die, simply because they did not have the experience to care for them properly. In a Kenyan study, four out of five orphans who were farming in one rural area said they did not know where to go for information about food production” (UNAIDS, 2000, p. 14). Such uncertainties can severely affect the psychological and physical health of these children, and hinder their opportunities to become loving, caring, socially-developed individuals.
Multiple Losses
AIDS often leads to the sickness and death of more than one family member, and often in more than one generation of the family (Giegel & Gorey, 1994 in Geballe & Gruendel, 1998, p. 51). Since HIV is sexually transmitted, there is a greater chance that it can be spread between the mother and father than in non-communicable diseases, thus increasing the chances that a child will lose both parents in a relatively short amount of time. However, the term ‘multiple losses’ does not only refer to deaths, but also to the social disruptions that AIDS-affected children often face. During the sickness and death of a parent, children may be sent to live with relatives or friends in other parts of the country, thereby removing them from communities and schools where they feel comfortable. Additionally, the relatives and friends may not be able to accommodate all of the siblings who have been orphaned, therefore brothers and sisters are split up to live with different members of the extended family. Thus, the loss of a parent is compounded by the loss of siblings. By wearing away the support system that children need to successfully cope and develop resiliency, the multiple losses of parents, siblings and familiar surroundings may prove to be particularly adverse.
Additionally, many orphans experience the loss of sexual innocence. AIDS orphans are more likely to be sexually abused, and they often endure exploitative situations, such as prostitution, as a means of survival. “Because children are usually less physically and emotionally developed than adults and more vulnerable due to limited experience and lack of political and economic power, they are easily subjects of abuse and exploitation when there are no caring adults around to protect them” (Lyons, 1999, p. 18). Unfortunately, such situations puts AIDS orphans at a higher risk of contracting HIV than children of similar age. In a sad cycle of trauma, such HIV infected children will go through the same uncertainties that they experienced during the illnesses of their parents. They will once again ask questions such as, “When will I get sick?” and “How will I afford medicine?” Only, this time, the children may be in a much poorer financial situation, and may even have to experience their trauma alone. In many African countries there is no welfare system or state assistance for medical care, thus exacerbating the problem.
Another loss to consider is the loss of innocence and childhood. Many AIDS orphans become the head of a household, and are responsible for the well-being of numerous siblings. Such children often must pass up their own childhood experiences to assume the role of the adult within the family, even when they are at a developmental age when parents and other influential adults are very important in their own lives. Thus, children in need of an adult must become the surrogate adult for others.
The following story tells about the life of Kevina Lubowa, a 14 year old Ugandan girl who cares for her six younger siblings:
AIDS means acquired immune deficiency syndrome. It’s a terrible disease. It killed both my mother and father in 1992. It killed all brothers and sisters of my father. It has killed many men and women in Uganda.Some houses have been closed. But our house was not closed because my father and mother left me with four brothers and two sisters. I look after them. I also look after my grandfather who lives near us, because his wife died and nobody was there to look after him. He is 84 years old. He lost his wife in 1992. My grandfather does not see. He has eye problems. It is me who looks after the family.
From school I go to bring water from the well. I take a jerrycan on my head. I tell my brothers and sisters to go in the bush and collect firewood. Sometimes we don’t have a fire, we go and get it from our neighbors. We cook potatoes, matooke, pumpkins and casava. My brothers do not want casava; they want only matooke. Our banana plantation is now a forest. We dig in our plantation on holidays and Saturdays. Our food is not enough. Some days we don’t get food. We get cassava with boiled water as sauce. We don’t have money to buy sugar or tea leaves.
In the evening I make up beds for my younger sisters and brothers. Every week we cut grass for use as our mattresses. We sleep all together and cover ourselves with blankets. Sometimes we sleep in the corner of the house because our house is leaking. Our blankets get wet and we put them on the fire or in the sun to dry.
There is a problem of disease. We get sick and go to the dispensary. At the dispensary they want money but we don’t have money. They give us tablets. We foot from home to the dispensary. We cannot stop a car because they also want money. Old women help us and give us leaves and mululuza to chew. This helps to get rid of fever.
Because I am a girl, people think I am weak. So they come home and steal our cassava and firewood. Because I am a girl when I see them I can do nothing. Some people in the village are not friends. They shout at us. They don’t give us advice; we don’t have anyone to call father or mother; we feel sad when we see other children laughing with their father and mother. In short, this is how I find life.
But other orphans have the same life. They don’t have blankets; they don’t eat meat; they don’t have sugar; they sleep in huts. Some go to eat at the neighbors or they get one meal a day. At school, life is good. The teacher calls us orphans, but I don’t like that name. Even other children don’t want that name. We think we are animals.
Source: Xth International Conference on HIV/AIDS and STDs in Africa, The Alliance of Mayors and Municipal Leaders on HIV/AIDS in Africa, Presented during the Symposium on HIV and Development “Voices” Panel,Abidjan, December 1997. Available through the UNDP website at www.undp.org/hiv/Mayors/introeng.htm.
As Kevina’s story indicates, AIDS-affected children endure enormous losses within their lives. Whether it is the deaths of their parents, the foregoing of their childhood, sexual exploitation, or malnourishment, AIDS orphans are challenged to cope amidst life’s greatest challenges. Such losses put tremendous hardship on their ability to fulfill their basic needs, and put at risk their ability to become optimally functioning adults.
Stigma
Despite the efforts to mainstream the discussion of AIDS, to clarify its causes, and to teach about the treatment and care of the infected, AIDS still has a high degree of stigma attached to it. “The blaming of people with HIV/AIDS-related sicknesses for their condition has been widely reported… Many Americans continue to stigmatize people with AIDS, perceiving them to be deserving of the disease as punishment for offensive or immoral behavior” (Seeley & Kajura, 1995, p. 80). Such stigma can lead those infected, as well as those associated with the infected, to be discriminated against or ostracized by their communities and families. Such discrimination may manifest itself through the denial of schooling or health care to orphans, where “evidence suggests that AIDS orphans may be at greater risk of dying of preventable diseases and infections because of the mistaken belief that when they become ill it must be due to AIDS and therefore there is no point in seeking medical help” (GBGM, 1997, online). The stigma may also make it less likely that AIDS orphans will be taken into another’s home or family, or even receive assistance from the community (Lyons, 1999, p. 18).
Silence and Family Secrets
Often, the stigma of HIV/AIDS provokes the desire to cover up the disease. “Many parents are reluctant to talk openly and honestly about their infection with their children from a sense of shame and self-reproach” (Geballe & Gruendel, 1998, p. 52). In fact, in Uganda, it is unlikely that the word ‘AIDS’ will even be mentioned when talking about one’s ill health or cause of death. It is much more common for people to simply say “He is very ill” or “She died of fever/malaria/typhoid”. As a result of this silence, the disease becomes “unnamed, unspoken, and often unspeakable to children who then have no name for what they know is happening to their loved ones and to themselves” (Nagler et al., 1995, p. 75). To make matters worse, these ‘family secrets’ prevent children from seeking the social support from friends and other adults that could help buffer this enormous stress.
Disproportionate Impact in Communities in Poverty
Many African towns and villages have a surplus of unmet educational, social, and health care needs. The addition of the stress of AIDS can be devastating. The United States Agency for International Development states that “per capita and household income will decline as more families are thrown into poverty by the costs of illness, health and hospital care and support of orphans… HIV/AIDS also will reduce the number of teachers available, just as it will reduce the number of skilled workers in the health care and social services” (USAID, 1997, p. 6-7). UNAIDS has reported that in urban households of Cote d’Ivoire where a family member has AIDS, average income falls by approximately 60%, while health care expenditures quadruple (UNAIDS, 1997, p. 3).
As AIDS kills more and more adults, it seems that more and more children will be asked to take their places as caregivers and wage earners. Already, the International Labor Organization estimates that the number of children fully at work in developing countries is at least 120 million (ILO, 1996). While this number is not totally due to AIDS deaths, we can only assume that the AIDS pandemic will cause this figure to rise. It is an unfortunate paradox that education, which is viewed by many as one of the primary means to teach prevention and reduce the affects of the AIDS crisis, is becoming out of reach for more and more children, as they are kept home to contribute to household needs for labor and income.
The frustration of one’s basic psychological needs will hinder his or her ability to become an optimally functioning individual. One way that basic needs can be frustrated is through trauma. Trauma is “the experience of forceful events, which threaten a person’s life or profoundly threaten his or her psychological integrity, and overwhelm the person’s resources, his or her ability to cope” (Staub, unpublished, ch. 12, p. 1). Due to their trauma, AIDS-affected children are at risk of not having their basic needs met, and are therefore at risk of not achieving their full human potential.
Staub (unpublished, ch. 4, p. 1-12) has identified seven basic needs, which “must be fulfilled to some degree for people to be able to lead effective, constructive, satisfying lives. The degree they are fulfilled, and how they are fulfilled, have profound consequences on how we think and feel about ourselves and on how we behave toward other people” (Staub, unpublished, ch. 4, p. 1). The basic needs are:
1) Security – feeling free of physical and psychological harm
2) Effectiveness and Control – the capacity to protect ourselves from harm
3) Positive Identity – having a well developed conception of who we are and who we want to be
4) Comprehension of Reality – helps us create meaning in our lives by bringing ourselves and the world into alignment
5) Positive Connection – close relationships to individuals and groups
6) Independence or autonomy – ability to make one’s own decisions and choices, and
7) Long Term Satisfaction – belief that life is progressing in desirable way and have trust in future satisfaction and happiness
AIDS-affected children have their basic needs frustrated in many ways. In the previous section I identified five challenges to their healthy social development. The following matrix demonstrates how pervasively damaging each of the five challenges can be in the lives of such children. I have attempted to give just one simple example (through a statement, quote, or opinion) of how each of the five challenges frustrates each of the seven basic needs. Amazingly, I was able to fill the entire matrix, thus showing the enormously detrimental implications of the AIDS pandemic on children. Let me be clear, however, that these examples do not pertain to every AIDS-affected child. There are many AIDS orphans who are being cared for by loving, caring extended family members who are sacrificing to ensure that the basic needs of their children are being met. This matrix simply lists possible examples of how, in a worst-case scenario, the challenges can frustrate the basic needs. Unfortunately, for every one example that I have provided, I am sure that, in reality, many more exist.
Challenge Basic Need |
Uncertainty |
Losses |
|
|
|
|
Don’t know how to care for selves, siblings, crops, animals |
Loss of primary caregivers |
Discriminated against/ Denied health care |
Unable to turn elsewhere for help |
No money for food, health care, etc. |
|
|
Not knowing who/what is harmful or trustworthy |
Sexual abuse and exploitation |
Believing others’ negative perceptions |
Discouraged from seeking social support |
Feel frustrated and disorganized |
|
|
Feel as if they are a burden on others |
Loss of innocence and childhood |
“Others don’t value me, why should I?” |
Life of secrecy diminishes life experiences |
Poverty & day to day needs create negativity |
|
|
View world as uncertain and chaotic |
Life is fleeting |
“I am what others view me as” |
Reality is “unnamed, unspoken, unspeakable” |
Life is burdensome |
|
|
Relationships are temporary; no stability |
Loss of family ties |
Can result in loss of community relationships |
Discouraged from seeking social support |
May feel ineffective and undeserving of connection |
|
|
Extended family decides fate |
Exploited by adults for labor, sex, etc. |
Community opinion affects ability to make own decisions |
Family decisions more important than individual decisions |
No money or resources to follow one’s own path |
|
|
Uncertain of day to day activities, let alone the future |
Question own personal longevity |
Discrimination and ostracism diminish opportunities for satisfaction |
Inability to discuss the past and present will frustrate the future |
AIDS is just another barrier to achieving satisfaction |
The trauma experienced by AIDS-affected children can frustrate many, if not all, of their basic needs. However, “not everyone is destroyed or horrifically affected by difficult circumstances and events” (Staub, unpublished, ch. 12, p. 10). The concept of resiliency helps to explain why some people bounce back from trauma, while others are permanently affected by it. Understanding resiliency, and how it is fostered, may help to protect AIDS-affected children, and promote the fulfillment of their basic needs.
In their study of AIDS orphans in the United States, Geballe and Gruendel (1998, p. 56-57) identify three factors that appear to contribute to the resilience of children going through difficult circumstances: The way a child approaches challenges, the child’s experience within the family, and the external supports that exist for the child. The following diagram portrays the three factors, including their characteristics, as the support legs of a stool:
|
|
|
|
|
These three factors are each critically important in fostering resiliency within children. If one support leg is removed, then there will be imbalance. From these factors, and additional research on resiliency, Geballe and Gruendel (1998, p. 56-57) provide four insights for any resiliency-based model of care for AIDS orphans. These insights are primarily based on research conducted with AIDS-orphans in the U.S., and further research must be conducted before we will know the appropriateness of these insights in African cultures. The insights are:
1) The quality of care and support the child receives from whomever assumes the primary caretaker role during the parent’s illness and after the parent’s death is especially critical
2) Open communication about the illness and death is essential
3) Strengthen children’s internal coping abilities (mental health support, problem-solving skills, esteem-building experiences, positive outlets for physical energy, and a chance to be actively involved in planning what happens to them), and
4) Promote consistency and stability in the child’s environment at every possible opportunity.
Several African communities have begun to respond to the physical and psychological crises of their orphans by trying to apply some of these insights. According to UNICEF’s report Children Orphaned by AIDS: Front-line Responses from Eastern and Southern Africa, several villages in Malawi, Zambia, Uganda, and elsewhere have developed Village Orphan Committees (or a similarly named organization) that monitor the AIDS situation and take collective action to assist those in need. These committees have also set up communal gardens to support AIDS-affected children and families. UNICEF also helps provide small loans to help families and guardians begin or boost income-generating activities. Another exciting innovation is the volunteer community school. In these schools, a volunteer teacher is selected by the community (and typically paid with in-kind contributions), and all children are invited to attend the school for free.
Community responses such as these are exciting examples of how African communities are attempting to fulfill the basic needs of their affected children. Such responses seem to match up with three of the four insights for resiliency-based models of care. They attempt to increase the quality of care and support that AIDS-affected children receive, they help to strengthen children’s internal coping abilities, and they serve to promote consistency and stability in the child’s environment. However, I have not come across any African activities that fulfill the second insight: Open communication about the illness and death. In my experience in Africa, it seems that discussing the issue of death with children is not culturally appropriate. Perhaps this will change with time.
Unfortunately, despite the wonderful progress that many of these Village Orphan Committees are making, there are still millions of AIDS orphans receiving little or no support. One such group of orphans are the street children, who are living in the capital cities and other large cities, who must resort to crime or begging to meet their most basic physical needs. It is unlikely that their basic psychological needs will be satisfied.
AIDS-affected children endure enormous challenges. Uncertainty, multiple losses, stigma, family secrets/silence, and the disproportionate impact of AIDS in communities in poverty have greatly affected the healthy social development of children living with an HIV-infected parent and children who have already been orphaned. As a result of these challenges and traumas, the basic needs of AIDS-affected children are frustrated, thus reducing the likelihood that they will become optimally functioning individuals.
African communities have begun to address these issues in their own culturally appropriate ways. The creation of Village Orphan Committees and community schools have helped to strengthen the feelings of security, positive identity, and positive connection within these children. They have also served to fulfill the most basic physical needs, such as food, water, and shelter, for the extended families that are caring for AIDS orphans. Also, more and more NGO’s are listening to the actual voices of the affected children. Such children are capable of identifying their greatest concerns, and can assist in the design of solutions.
The challenges are huge and the steps to combat them are small, yet I believe that each village needs to be allowed to solve this crisis as it best sees fit. African villages have endured numerous crises over the centuries and have managed to respond in effective ways. I have to believe that the same will continue to be true of the AIDS crisis. There is a saying that “It takes a village to raise a child,” but I also believe that “It takes a village to praise a child.” The praise, encouragement, and guidance of the entire community is needed to help AIDS-affected children develop resiliency, learn to cope, and overcome their challenges. If we support African communities with the effective raising and praising of their children, I am sure that we will see a brighter future for Africa and its children in the years ahead.
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