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While recent scientific efforts have resulted in a series of discoveries and advances in understanding and controlling the virus that causes AIDS, this progress has had limited impact on the majority of HIV infected people and populations living in developing countries. The social and economic conditions that nurture the spread of the virus have to be confronted as essential elements in local and global efforts to stem its spread and create effective solutions to halt the epidemic. The current demographics of the epidemic illustrate that this is particularly true of the conditions of human life during childhood.
HIV has found a wealth of opportunities to thrive among tragic human conditions fueled by poverty, abuse, violence, prejudice and ignorance. Social and economic circumstances contribute to vulnerability to HIV infection and intensify its impact, while HIV/AIDS generates and amplifies the very conditions that enable the epidemic to thrive. Just as the virus depletes the human body of its natural defenses, it can also deplete families and communities of the assets and social structures necessary for successful prevention and provision of care and treatment for persons living with HIV/AIDS. This is demonstrated by the estimated 30 million people living with HIV/AIDS, mostly in developing countries. Over 2 million people are expected to die from HIV related illnesses this year adding to nearly 12 million deaths attributed so far to the epidemic. The impact of HIV/AIDS extends beyond those living with the virus, as each infection produces consequences which affect the lives of the family, friends and communities surrounding an infected person. The overall impact of the epidemic encompasses effects on the lives of multiples of the millions of people living with HIV/AIDS or of those who have died. Those most affected by HIV/AIDS are children.
Growing up with the HIV Epidemic
Children and young adults currently between the ages of 15 and 24 were born and grew up as the first generation to experience childhood during the HIV/AIDS epidemic. Today it is among this same population of 15 – 24 year olds that new HIV infections are concentrated. According to recent United Nations estimates, more than 50% of the 16,000 new HIV infections which occur daily are within this age group. An additional 10% of new infections occur among children under age 15. Since the virus was first identified in 1981, more than 3 million children have been born HIV positive and the mothers of over 8 million children have died from AIDS. By the year 2010 it is predicted that as many as 40 million children in developing countries will have lost one or both parents to HIV/AIDS. In some countries this is equivalent to one in every 4 to 6 children. The effects of HIV and AIDS on children who are orphaned, or in families where parents are living with the virus, not only include these calculable loses, but also the immeasurable effects of altered roles and relationships within families. Clearly HIV infection has its greatest impact on the young.
Childhood: Rights and Goals
Although “childhood” might differ for every human being and numerous interpretations of the concept exist, common to all is a period in the early years of human life marked by rapid growth and development. During the years of physical growth in which a child matures towards adulthood, the child is also developing psychologically and in ways that define intellectual, social, spiritual and emotional characteristics. The circumstances or conditions in which this growth takes place can limit or enhance development. Physical and emotional well being and social and intellectual development can be permanently limited for a person deprived of the opportunities and time to grow and develop successfully during their childhood.
The most universally accepted statements with regard to children and childhood can be found in the U.N. Convention on the Rights of the Child (UNCRC). Having been ratified by all but two member nations of the United Nations, this international covenant can rightfully be utilised as a guide for ensuring universally accepted goals for childhood. The individual articles of the UN Convention on the Rights of the Child address rights related to survival, protection, development and participation that enable a child, a person under age 18, to achieve the goals of childhood successfully. It confirms, as did the Universal Declaration of Human Rights, “that childhood is entitled to special care and assistance.”: this care and assistance being designed to promote and provide for, among other things, the “full and harmonious development of his or her personality” and “that the child be fully prepared to live an individual life in society.” To this end the UNCRC declares that “The family, as the fundamental group of society and the natural environment for growth and well-being of all its members and particularly children, should be afforded the necessary protection and assistance so that it can fully assume its responsibilities in the community.”
Children are affected by HIV/AIDS in ways that can diminish their childhoods and as a result limit choices and opportunities for successful survival throughout their lives. Circumstances of an individual’s life and their social context in family and community during childhood can increase the probability they will one day be exposed to, and infected by, HIV. In order to develop appropriate means of enabling and protecting people, either as children or as adults, against infection and the effects of HIV/AIDS, adequate and judicious attention needs to be given to the rights and realities of childhood.
HIV and AIDS are brutal escalators of other cruelties which children endure. In today’s world the majority of people living in poverty are women and children. Three quarters of the 24,000 daily deaths (more than 8 million every year) related to hunger are among those under the age of five (The Hunger Project). One hundred and twenty million children between the ages of 5 and 14 work in conditions that are hazardous to healthy growth and development (ILO). Estimates suggest that as many as 100 million children worldwide are homeless or spend most of their time surviving on the streets (UNICEF). Massive populations of families with children are displaced and often separated because of conflict and natural disasters. According to the United Nations Expert Report on the Impact of Armed Conflict on Children, prepared by Graça Machel, more than half of the near 60 million people displaced by war are children with millions separated from their families. Millions more have been injured, disabled, orphaned and died in armed conflict. Children are used as soldiers and forced to kill; raped by soldiers or made to watch their mothers and sisters raped and their families murdered. Added to these, children are victimised and trafficked as commodities for sale in local and global sexual prostitution and pornography industries. Estimates are that at any time, as many as one million children are involved in the commercial sexual exploitation arena every day. (ECPAT, World Congress Against Commercial Sexual Exploitation of Children). Countless others are physically, sexually and psychologically abused in what should be the secure confines of their homes and neighborhoods.
The roles that children fill as poor, hungry, exploited and abused human beings increase their vulnerability to HIV infection. This can occur directly through those activities known to be associated with transmission, or indirectly as occurs when earlier harm turns children into vulnerable adults. For example those with have a history of childhood physical or sexual abuse have also been found in adolescence or adulthood to be more likely than non-abused peers to engage in behaviors that place them at high risk of HIV infection..
Poverty, a Leading Promoter of HIV and AIDS
Poverty is clearly a factor in the spread and impact of HIV/AIDS. The struggle to survive everyday overshadows attention and concern about a virus that does not demonstrate any immediate harm. HIV/AIDS is a distant threat until it has a visible presence manifested by illness and death. Poverty, in depriving people of access to health facilities, schools and media also limits their access to information and education on HIV/AIDS. Poverty pushes families, often unaware of the risks, to send children into the work force or to hand them over to recruiters promising jobs in a distant place where, unprotected, they might be forced into a childhood of harsh labor or sexual abuse. When HIV/AIDS appears in an already impoverished household there are limited means for response, the mortality rate is high, the impact is severe and the pressures and pain of poverty increase. As increasing numbers of infected young adults are unable to contribute to their communities through their work as parents, teachers, laborers, drivers, farmers, etc., entire economic and social structures of communities suffer and demands for services increase with fewer able people to provide them.
The vast majority, over 90%, of all people infected with HIV since the beginning of the epidemic are from the developing world. In sub-Saharan Africa where two-thirds of the world’s infections have occurred, more than 7.4% of the population between the ages of 15 and 49 is estimated to be infected with HIV. In Zimbabwe infection rates are estimated to be in the region of 20% while in Botswana adult infections are thought to be approaching 25 – 30% of the population. In India although the overall infection rate is still less than 1% of the population, this amounts to between 3 and 5 million people, most of whom are untested and unaware of their infection status. Ante-natal testing among those with access to health facilities provides some staggering statistics: in Haiti the national rate is over 8%, while in some areas of Southern Africa local HIV infection rates among pregnant women of 30 – 60% have been reported.
Losses for Children that Last a Lifetime
While the majority of the 2.3 million predicted HIV/AIDS related deaths this year will occur in developing countries, this is also where 87% of the world’s 2 billion children will be trying to grow up. Although life-saving drug regimens have dramatically decreased mother-to-child transmission of HIV and have kept mothers well and alive longer in the industrialised world, poverty and the lack of necessary social and medical infrastructure and services make them inaccessible in those places where they are most needed. Many women who know that they have tested positive for HIV may have no choice but to breast feed their babies when clean water and formula are unobtainable, even though they risk transmitting infection to their babies. Without access to health care or a nutritious diet, infected infants often die before they are two or three years old. For children who survive longer, for uninfected children whose parents or guardians are incapacitated by HIV/AIDS, and for those who are orphaned, childhood can be dramatically shortened in other ways.
The illness or death of parents or guardians because of HIV/AIDS can rob a child of the emotional and physical support that defines and sustains childhood. It leaves a void where parents and guardians once provided love, protection, care and support. Since HIV is often (but by no means always) transmitted to sexual partners, children are more likely to lose both parents to HIV/AIDS. Someone is needed to step into parental roles so that children can survive and develop into healthy and productive adults. Grandparents, aunts, uncles or other caring adults frequently assume responsibilities that enable children to remain in their homes or take them into their own families and households. However, where the infection rate is high or harsh social or economic conditions exist, adults may be unable to assume the additional responsibilities of these families and children affected by HIV/AIDS. Other barriers grow out of ignorance and social attitudes. Fear of discrimination leads to families keeping secret the knowledge of HIV infection and AIDS within the household rather than seeking help. Others seek help but are rejected or abandoned, even by family members, when they reveal the nature of the illness. Fear, discrimination, ignorance, and social stigma associated with HIV/AIDS, in addition to overwhelming demands on caring adults, leave children isolated with their grief and suffering while they watch parents and other loved ones die and their families languish.
Children in Adult Roles: Working to Maintain Home and Family
In the absence of capable adult caretakers, children themselves take on responsibilities for the survival of the family and home. Undeniably children in most families share duties even when parents are healthy. In economically disadvantaged communities, a child’s contribution is often necessary for the survival of the household. But in numerous HIV/AIDS affected households children have not simply increased the amount of work that they do but have also assumed decision-making and responsibilities that transform roles within families and households. Children assume adult roles as heads of household because there are no alternatives. They care for parents and younger siblings who are sick and dying from HIV/AIDS. They take charge of the care and running of the home for themselves and their siblings. They work long hours doing household tasks, supervising younger children and engaging in income-generating work in order to support the family. Many quit school and jeopardise their own health and developmental needs to take on roles as parent, nurse and provider.
Failing to Meet the Goals of Childhood
In many families and communities the environment for healthy growth and well-being has been devastated by HIV/AIDS. Instead of receiving special care and assistance, childhood is spent providing care and assistance. Children become decision-makers, responsible for the social and economic future of the family, and fill these roles without the physical and emotional protection, guidance and support that, as children, they deserve. They may act like adults, but it cannot be forgotten that these “heads of households” are children, but children whose childhood has been impoverished by HIV/AIDS. In such households, all children are affected. The care that older siblings can provide for younger children is likely to be inadequate because of the increased poverty of the household and the lack of maturity and experience of the caretaker, leading to poor health, hygiene and nutrition; absence from school, and developmental delays. The loss of material, emotional and developmental support from an adult exposes children to the distress which results from lack of affection, insecurity, fear, loneliness, grief or despair. It limits the possibility of a successful childhood which, in turn, affects the future as adults.
In this world where some children are fortunate enough to be loved and nurtured in ways that respect their rights as children and are supported in ways that enable them to become independent, competent, adults while others are treated as little more than property or tools to be used for the benefit and satisfaction of adults, the idea of “treating a child like a child” has contradictory meanings.
Vulnerabilities of Childhood
Even when adults intervene and take responsibility for children who are left without parents or guardians because of HIV/AIDS, it cannot always be assumed that children benefit. The limitations that adult society places on them because of their assumed immaturity (while often to their advantage) can also leave children powerless and defenseless. Precisely because they are children, in most societies, children have no direct right to own or control property, nor to take responsibility for important decisions concerning their own future. While the right to participate in such decisions is confirmed in the UN Convention on the Rights of the Child this is often ignored. As a result of the sickness or death of parents or guardians, children are often made to leave the place that they have always known as “home” and sometimes are separated from their closest remaining family members, their siblings. They are dependent on the abilities and attitudes of adults who are given ownership or control over their property and decision making about their future life. Separated from close family members, without a secure home, the vulnerabilities of childhood can take on new dimensions.
Since the need for caretakers of infants and very young children is obvious and immediate as a matter of basic survival, they are taken into the homes of family members, placed with foster parents or guardians or in group homes or larger institutions. However, the needs of older children (approximately 8 to 18 years of age) can be more easily under-served, overlooked or underestimated, since the risks to their survival are less apparent. Even under good conditions, where resources and caring adults are available, it is not easy for a child who has lost everything to recover and adjust. Some are offered a home with caring adults but nonetheless resist being absorbed into new families and homes because of fear and distress. For the majority, counseling and psychological support services are unavailable. Some react with behavior which provokes rejection. Others run away. Where infection rates are high within a family or community, even the most loving guardians must focus their energy on the survival of those households where large numbers of children have been taken in and need care and support. Although these guardians or foster parents work hard to furnish a caring substitute home and family for children, there are often limits to how much care and support they are actually able to provide. Children may be unable to go to school because there is no money to pay for books and fees or because they experience rejection or discrimination. Some must leave school to help care for younger children or to earn an income to help support the household. Fear and frustration lead children to run away in search of a better life often only to join the growing numbers of homeless and exploited children.
The Value of a Child
The experience of older children who have lost their homes or families to HIV/AIDS related illness and death is insufficiently documented. However, in a world where millions of children are neglected, exploited and abused everyday it is reasonable to assume that these children can become easy prey to adults who are unconcerned with the child’s best interest. Some adults might take children into their households to serve an ulterior purpose. Children are easy to intimidate and control. Children can provide extra income or free labor and can be treated like property or servants, kept from school and given inferior food and care. Millions of children suffer neglect and physical and sexual abuse. In the absence of alternatives, more and younger girls marry early. Boys and girls trade abusive situations for the streets where life and survival are even more difficult. The risk of HIV infection rapidly increases as children are exposed to drug use and engage in unprotected sex (willingly or coerced), exacerbated by the increased susceptibility to infection of bodies which are still in the process of physical development and maturation.
Balancing Empowerment and Protection
The empowerment of children, essential in reversing pervasive inequality between adults and children, needs to be balanced with the necessary protection and guidance to which children have a right as part of safe and healthy development. However, adult authority can result in decisions which are misguided or unrealistic.
Judgements about children based upon adult wishes rather than reality can lead to decisions that do not serve a child’s best interest. For instance, in many societies, prevailing attitudes support the idea that children should be “protected” from information pertaining to sex in order to preserve “childhood innocence”. Such attitudes are inconsistent with the realities of life for millions of vulnerable children and therefore deprive them of opportunities to understand the risks and dangers they may face. One result of this is that children are inadequately taught about sexuality and STD’s(including HIV/AIDS) before sexual experiences begin. The factors which make it necessary to provide such education is a problem many adults prefer to ignore. Children left powerless through the denial of sex education are also rendered powerless to protect themselves from infection in those situations which they are able to control.
“Condoms don’t fit children”
The over-simplification by adults of HIV/AIDS issues relevant to children is demonstrated by current literature, conferences and programmes. Attention to non-infant children is most often restricted to populations of older children or adolescents judged to be in situations of high risk for infection. Emphasis is generally placed upon HIV/AIDS education and statistics, or methods of altering “high risk behaviors” among such groups. The growing rate of infection suggests that the wrong problems are being addressed. Although HIV/AIDS education is valuable and important for all people, it is not enough for persons in vulnerable situations. Too often, HIV prevention efforts among vulnerable children and young people have focused on changing behavior instead of helping children and young people in ways which remove, or protect, them from high risk situations. A striking example of such inappropriate focus was summarised by a participant at an international conference on Street Children, Health and HIV held in Rio de Janeiro. Amidst familiar presentations and workshops about street children and the conditions of their lives that place them in high risk of infection, an adult participant reminded the audience that we must solve an important problem, “Condoms don’t fit children.”
The Problems that Children Want to be Solved to Reduce Their Risk of HIV Infection
When the problems and questions posed by children themselves are considered the contrast with the concerns of adults is dramatic. At the same conference street children invited to address participants asked:
A video tape sits on my bookshelf from a later meeting of children in the Brazilian National Movement of Street Children with the memorable face and voice of a boy speaking about his concern for the girls and the things (rape and sexual abuse) that happen to them on the streets. What worth do the solutions of HIV/AIDS education and smaller condoms have in the lives of these children? How is their childhood innocence being protected? In Stockholm the powerful voices of adolescents from around the world came together to participate in the World Congress Against Sexual Exploitation of Children. They asked that children and adolescents be given the information they need to protect themselves from HIV infection and other STD’s, but first they pointed out that children must be able to use this information. They asked for solutions to the problems of poverty, abandonment and abuse that drive children from their homes and into situations in which they are sexually exploited. They asked for solutions to their powerlessness against sexual abusers. They asked for ways to get off the streets and for homes and love and safety. They asked to be treated as victims rather than criminals. They asked to be given a childhood.
In Trondheim, Norway (1997) child workers took the floor at an international conference on Urban Childhood and asked for respect and for acknowledgement of the realities of their lives and the worth of what they do to help themselves and their families. They asked for solidarity from adults in finding ways to protect them from abuse and exploitation. For children growing up during the HIV epidemic the virus is only a piece of the problem.
The problems these children have put forth are monumental but so is the HIV epidemic which weaves through them all. This social context cannot be ignored or neglected in efforts to contain the virus. If success in prevention, treatment and cure is ever going to reach the majority of the population of the world affected by HIV/AIDS, than the elimination of conditions which nurture and strengthen its hold on individuals and communities and which provide obstacles to prevention and care must be zealously sought. Prevention is usually easier than cure and recovery not only in matters of physical health but in all ways that affect the total well being of persons. Opportunities that foster the well being of a person begin in the uterus and depend on long term support from others. This dependency and support must exist throughout childhood only diminishing as the child approaches adulthood equipped with the strength and skills for independence and self sufficiency. The lifelong well being of a person depends on opportunities for the development of strengths and skills during childhood.
Aiding and Protecting Development
Sustainable development, simply stated as the continued ability to develop and provide for one’s needs, is a concept that can be applied to individuals or societies. The process towards the sustainable development of a human being, childhood, takes place at the center of many interdependent layers of social structures. The first tier is most often the basic social unit of the family. Outside the boundaries of the family the child is enveloped in broader social components of the community – extended family, peer groups, school, social and religious organisations, work places, etc. The development of children is determined by the willingness and ability of family and community members to contribute to their successful survival and growth. In the most concrete ways this includes the provision of food, shelter, clothing, health care, schools and recreational opportunities. It also includes emotional needs such as love, security, guidance, and encouragement.
In much the same way the family or community which has not achieved sustainability is dependent on the willingness and ability of other social entities (the state, nation, international community) to provide support and assistance. At all levels the ability of each social entity to sustain itself and provide support for others is dependent on the ability of its individual members to contribute to the existing demands within the social group. Just as a family benefits from the contributions and achievements of individual members, so does the community or nation. The provision of a full and productive childhood for the potential future contributors of any society is necessary for the continuation of that society’s sustainable development.
Building on Existing Strength and Human Assets
The provision of sustainable conditions which will decrease the vulnerability of all people to HIV infection requires cooperative efforts on all levels of society to provide for the healthy growth and development of children. Children, by necessity, require continued support, but they also possess enormous potential for growth and sustainability. Successful approaches have been developed which focus on increasing the ability of families and communities to care for their children. The following are examples of such approaches.
Community support groups for children and family members who are living with HIV and for uninfected family members and affected others, which can provide:
Services and assistance to support families affected by HIV/AIDS in ways that enable them to stay together and maintain their home. Such services can be offered by a combination of formal and informal service providers, including government or privately supported agencies, and might include:
Training for those in the community who interact with HIV/AIDS affected families, can allow more people to contribute to prevention and the provision of quality care, and to offer support to dying parents and their children in planning for the future. Such training can also reduce the fear and discrimination which result from misunderstanding and misinformation.
Peer education programmes have been conducted in various parts of the world involving children and adolescents in age-appropriate peer education and education of others in their communities. Children work with facilitators in learning about HIV/AIDS. They design projects, create educational materials, and educate through drama and talks in schools and community meeting places. Such approaches not only provide a mechanism for educating about HIV/ AIDS but also encourage confidence and self-esteem in those children and young people who are involved.
Efforts to remove and protect children and adolescents from high risk situations. Such programs or activities need not necessarily be focused primarily on HIV AIDS but may include activities with children which address their rights and diminish neglect and abuse, through contact with caring adults, access to education, protection, health care and by fostering self-esteem and confidence. These could include:
Similar strategies need to be widely and rapidly developed, building upon existing community efforts and assets. Where needed external support must be provided to enable families and communities to achieve a level of sustainable development at which they can provide for the healthy growth and development of all of their children.
If the common goal is to end the global epidemic then it is time to look at the problem beyond a focus on the virus, as it exists within the human body, and to find ways to alter the social and economic environment that enable it to flourish. It is time for global education not only about HIV/AIDS but also about the social context of underdevelopment and poverty that engulfs many of those communities which also have the highest rate of infection. It is time for human society to work at all levels to develop ways to find lasting solutions to the right problems. Finding treatments that protect babies from infection or that add years to the lives of people living with HIV/AIDS is a brilliant first step and has saved children from infection and restored life and hope to many infected people. Such improvements must continue. However, this progress is grossly inaccessible where most needed. If, one day, a vaccine for HIV and cure for AIDS are developed, they must be available to the developing world.
Even then, will enough have been accomplished if the spread of HIV is halted, but the human suffering that provided fertile ground for the epidemic in the first place is allowed to continue until the next virus that might get the world’s attention?
1.Throughout this paper the term “child” will refer to all persons under the age of 18 in agreement with the U.N. Convention on the Rights of the Child. However, it should not be forgotten that life is continuous and conditions and events that impact the life of a person as a child also have an impact on the life of that same person as an adult.
3. A study by the National Institute of Justice in the United States (NIJ 1994) found that persons sexually abused as children are 28 times more likely than a compared control group to be arrested for prostitution as adults. According to a survey of 2700 students in grades 9 through 12 (Lodico and DiClemente, 1994, “The association between childhood sexual abuse and prevalence of HIV-related risks behaviors, Clinical Pediatrics 33 (8): 498-502 as reported in National Network for Youth: Issue Brief #2, 1995) females who reported sexual abuse were 15 times more likely than their peers to have shared needles, five times more likely to have had sexual intercourse before age 13 and 2.4 times more likely to have been pregnant. Males were ten times more likely to report sharing needles, four times more likely to have initiated sexual intercourse before age 13 and five times more likely to have been involved in a pregnancy.
5. “States parties shall assure to the child who is capable of forming his or her own views, the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.” ( UN Convention on the Rights of the Child, Article 12 paragraph 1)
This work reflects the lessons and experience provided to me through my affiliation with the Association François-Xavier Bagnoud. The Association and Foundation FXB develops and supports projects in Thailand, Myanmar, Columbia, Brazil, Uruguay, Washington, D.C., Uganda, Rwanda and India that benefit children and their families especially those infected and affected by HIV/AIDS. The Foundation funded the establishment of the FXB Center for Health and Human Rights at Harvard School of Public Health and supports the FXB Center for Pediatric AIDS and the FXB International Pediatric HIV Training Program at the University Hospital of Medicine and Dentistry of New Jersey.
Miriam Lyons represents the Association François-Xavier Bagnoud (AFXB) in areas related to children’s rights. She has worked since 1990 with AFXB, its project partners and colleagues around the world, including children and young people, in their efforts to address the rights of children, especially as related to child participation, HIV, homelessness, child labor and sexual exploitation. She is the AFXB representative to the Child & AIDS International NGO Network (CAINN) and the Working Group on the Rights of the Child of the NGO Committee on UNICEF. She has taught Philosophy for Children and Conflict Resolution Programs in New York City Public Schools and occasionally teaches philosophy and medical ethics as an adjunct professor at St. Peter’s College.
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