A young AIDS orphan (right of grave) mourns the death of her father with community members in Kooki county.

For many in Rakai, the crisis of being sick with AIDS or having to care for a family member who is infected with the disease is enough to tip them over the edge of bare survival into starvation and destitution. This is especially true in rural households, which are forced to cope by sacrificing their long-term security — pulling children out of school, selling off land and other assets and exhausting their savings. The decreasing ratio of productive adults to dependent children deepens poverty even more because having too many dependent children in relation to productive adults makes it difficult for people to secure sustainable livelihoods and move out of poverty. This puts increased pressure on the land and other resources.

The effects of HIV/AIDS are worsened by poor access to health care. About 40 per cent of people in Rakai district do not have access to health care facilities either because they cannot afford to pay transportation costs to get to and from facilities, they cannot afford the fees associated with treatment, or both. The cost of treating one HIV/AIDS patient currently ranges from 370,00 to 1.28 million USh ($214-$740 US) per month, which greatly exceeds what the majority of those infected by the virus can afford. Moreover, the large volume of patients seeking services from an already overstretched health care sector is overwhelming personnel in the health care sector. The stigma attached to HIV/AIDS worsens an already difficult situation and results in the neglect of some people who show clinical signs of AIDS.

Furthermore, just as AIDS has a negative impact on development, so can development processes sometimes increase the risk of becoming infected. For instance, in countries like Uganda, the spread of HIV/AIDS can be traced along major trade routes. HIV infection rates are higher along main roads and especially popular transport routes. In Rakai district, infection rates are higher in trading centres, particularly those that are common stops for truckers headed to or from southwestern Uganda, Tanzania, Rwanda and Congo. In additional to good transport and trade routes that facilitate considerable population movement, several other factors make Rakai district a high-risk environment for HIV transmission; namely, it is an area characterized by poverty and inequalities of wealth, poor health services, unequal gender relations, and weakening family structures.

Households, CBOs bear the burden of care

Before AIDS, the term “orphan” had little resonance in most African cultures because a parents’ sisters and brothers, who are referred to as aunts and uncles in the West, are also deemed to be mothers and fathers of children. Thus, provided an aunt or uncle can care for a child, the child is not an orphan. According to Baganda tradition, which is the majority tribe in Rakai district, the clan either appointed a surrogate parent locally referred to as “omukuza”, the orphans were divided among siblings of the deceased, or the orphans became the responsibility of grandparents, especially on the paternal side. But the rapid depletion of the adult population in the district due to AIDS coupled with an unprecedented increase in orphans is overwhelming traditional cultural support mechanisms to the point of almost complete exhaustion. Today, many would-be surrogates have died, are ill or are already so overburdened with their own family members dying of AIDS they simply do not have the capacity or resources to take care of more children. This had led to a new social order, whereby children — once protected because they were perceived to be the most vulnerable members of society — are left to fend for themselves. Increasingly, children find themselves heading a child-headed household (CHH) or belonging to a household headed by a sibling under the age of 18 or an elderly grandparent whose own poverty, advanced age and/or ill health makes them ill equipped to care for them. The needs of children affected by AIDS, particularly the so-called “orphan generation”, remain largely hidden and go largely unmet.

Yet, if the needs of these children continue to go unmet, the consequences will be dire not only for themselves but also for the society in which they live. These children are growing up with little sense of basic human security. They are usually poorly educated, have low self-esteem, and possess limited social and life skills. They have minimal opportunities to pull themselves out of poverty, and little chance to become productive, self-sufficient citizens and parents. Instead, they are likely to increase instability since research suggests these children are more likely to turn to crime and create other social problems in society at large, perpetuating the human rights abuses they have suffered. It is likely there will be a corresponding increase in the number of street children and child sex workers, exploitation of girls and women, early marriages, and unwanted pregnancies, thus creating a further generation of ill cared for children born to these impoverished parents. The vicious cycle of deprivation and high HIV infection rate will repeat itself, but at greater intensity because the cushion of a relatively uninfected elderly generation will no longer be around. In other words, lack of sufficient care now is a recipe for increased spread of HIV infection in the future, and for increased social instability. (Jackson 2002: 257-258)

AIDS: A significant threat to human security in Rakai district

In summary, as Nef’s human security/insecurity analytical matrix predicts, the impact of HIV/AIDS on Rakai district has been profound and complex and can only be adequately comprehended as a complex interplay of dynamic and interconnected mutually-reinforcing dysfunctions (Nef 1999). UNAIDS (2001) has reported that HIV infection levels are generally highest where access to care is lowest, and social and economic safety nets that might help families cope with the impact of the epidemic are badly frayed. Tragically, Rakai is a textbook example of this. HIV/AIDS is destroying traditional cultural coping mechanisms, increasing poverty, reducing family income and productivity, which has not only led to a further shrinking of the adult population, but also widened and increased dependency on scarce resources and vulnerability among the elderly and children. This not only worsens the plight of the orphans and other vulnerable children (OVC) but also undermines the observance of children rights. It is within this context that Participatory Action for Rural Development Initiative (PARDI) is working tirelessly, resolutely to address one of the most significant threats to human security and community development in Rakai district.

How this report is organized

This report aims to provide up-to-date information on the effect of the HIV/AIDS epidemic in Rakai district and particularly the counties where PARDI is working, on responses and gaps and on the opportunities and challenges PARDI is encountering. The report aims to examine this urgent humanitarian crisis from an often overlooked and ignored perspective — the marginalized, vulnerable individuals who courageously struggle to survive in the face of unimaginable adversity. Moreover, this report presupposes that these people can be and ought to be agents of social change and economic progress rather than passive recipients of aid or, in other words, given the chance they can effectively shape their own destiny and help each other.

It should be noted that PARDI played a significant role in planning and carrying out field research and assisting with the data analysis upon which much of this report is based. In that way, the report rejects the positivist model of the objective researcher and passive research subjects and embraces instead the notion that research can only be strengthened when the perspectives of those being studied have input into the design and conduct of research. Since most of the people PARDI supports do not speak English, PARDI staff also played a critical role as translators in the field. A variety of research techniques were used in the development of this report, including: an analysis of current, relevant studies, reports and books about vulnerable people infected with and affected by HIV/AIDS in Africa; an examination of the lyrics of songs and scripts of skits performed by drama and choir groups made up of OVC; an assessment of the human security issues facing OVC as revealed through their personal drawings and letters; observing those who are the focus of this report in their natural environment and participating in activities in the field from June 2005 to March 2006 as PARDI’s media relations officer/resource mobiliser.

The report begins by outlining the nature and extent of PARDI’s efforts to assist those infected with and affected by HIV/AIDS in Rakai district. The next section focuses on the most pressing human security challenges of OVC and CHHs as revealed in their drawings, letters, songs and skits. The report goes on to describe, more generally, the impact of HIV/AIDS on children. The concluding section builds a case for a made-in-Africa response to the epidemic, outlines key lessons learned and suggests recommendations for the way forward. The report wraps up with some final remarks about my field practice. An ancillary package that accompanies this report includes a CD with a PowerPoint presentation detailing PARDI’s work as well as short movies of a choir and drama group, made up of OVC that PARDI assists, performing songs and skits.

PARDI

A participatory, people-centred response to HIV/AIDS

The first response to the problems caused by HIV/AIDS comes from the affected children, families, and communities themselves, not from government agencies, NGOs or donors.

Hunter and Williamson (1998: 4)

When it comes to caring for people with HIV and AIDS, the richest resource a country has is, without question, the compassion of its people.

UNAIDS (2000a: 60)

PARDI emerged out of necessity, dedication and compassion in 2001 in direct response to the desperate needs of those infected with and affected by HIV/AIDS, and particularly the most vulnerable and underserved people in the community. A non-governmental community-based organization (CBO) that is registered with Rakai district government authorities, PARDI currently operates in Kooki and Kabula counties in Rakai district and Mawogola county in Sembabule district. PARDI is endeavouring to fill gaps in essential services since most of the organization’s target beneficiaries do not receive assistance from government agencies or other non-governmental organizations (NGOs).

PARDI’s objective is to engender meaningful, fundamental and sustainable change particularly at the community and household level using a strategy of “bottom up”, “people-centred” development. This strategy assumes development is a process of progressive and human-centred quantitative and qualitative transformation of society and therefore communities ought to be regarded as active rather than passive participants in the development process. In this way, PARDI’s “bottom up”, “people-centred” strategy rejects, implicitly at least, generalized and deterministic modernization and dependency models of development, which presuppose that economic growth propels development in a linear fashion and change comes from the top down.

A PARDI volunteer takes note of the needs of an elderly widow.

Currently, approximately 21 full-time and 51 part-time volunteers carry out PARDI’s activities. A board of trustees, in collaboration with a program officer, makes PARDI’s key management decisions. The program officer also supervises three project officers who are responsible for activities related to community development, OVC and AIDS support and education. The CBO relies primarily on financial donations and material support from volunteers and well-wishers from Uganda and abroad to operate. A network of volunteer counsellors and members of the local council I (LCI), who are representatives of the local government system, link PARDI to the grassroots community. In stressing the importance of “bottom up” planning in response to the most pressing issues that affect the community, PARDI meets regularly with beneficiaries, guardians and other partners to exchange ideas, opinions and information. Community members who are targeted for support are involved in the process of identifying key problems, assessing and prioritizing needs, and brainstorming possible solutions to the problems identified.

Table 1: The impact of AIDS on vulnerable people in Rakai District AIDS increases poverty and long-term insecurity at the household level in terms of physical, emotional and psycho-social suffering and distress. AIDS also leads to domestic conflicts and family breakdowns. The human security impacts of AIDS on the vulnerable people PARDI seeks to support in Rakai district vary but commonly involve:

• Loss of income, remittances and productive labour leading to increased poverty and poorer nutrition Increased expenditure on health care, transport and funerals
• Reduced expenditure on food, clothing, school, shelter and other basic necessities
• Drawing down of savings and sale of assets
• Emotional and mental stress
• Increased workload on women and children
• Increasing number of elderly caring for orphans and children caring for themselves in child-headed households
• Children drawn out of school
• Children selling their labour in exchange for money and/or food to support their families
• Social inequalities between children
• Flight of orphans to urban centres in search of work
• Early marriages, especially for girls
• Risks of sexual and economic exploitation as well as physical, psychological, sexual and other human rights abuses of children
• Risks of stigma, isolation and rejection

Uplifting standards of living

Since its inception, PARDI has grown both in size and scope of its activities according to community needs, scaling up support to vulnerable community members, especially children living alone in CHHs and other children affected and infected by AIDS. Today, PARDI aims to improve the lives of approximately CHHs and over 2,000 orphans, 150 people living with HIV/AIDS (PWA) and 132 widows and elderly people who courageously struggle to survive chronic hunger and malnutrition, disease, poor access to safe drinking water, inadequate shelter and other life threatening challenges. The organization employs a multi-sectoral, integrated and holistic approach in an effort to uplift the standards of living of those most devastated by HIV/AIDS through self-help strategies and community-based initiatives that involve: community mobilization; psycho-social counselling; financial and material support as well as income generation; skills and vocational training; counselling in HIV/AIDS prevention and care; treating opportunistic infections (OI) and providing palliative care; referrals to voluntary HIV counselling and testing services and pre and post-test counselling; home-based care.

PARDI convinced a community benefactor to donate land and facilities that were converted into Valley Primary School, which opened in the fall of 2004, in Lyantonde town

In a practical “on-the-ground” sense PARDI’s activities include:

• Provision of critical basic needs such as food, clothing, bedding and medication.
• Training community members in improved agricultural methods and distribution of high yield seeds, anti mosaic cassava cuttings, goats, and chickens to improve food security.
• Health outreach, including psycho-social counselling, education about antiretroviral therapy (ART), AIDS management, vocational therapy and nutrition.
• HIV/AIDS awareness and sensitization programs, including children's performance art groups made up of orphans and vulnerable children (OVCs) that educate through song, dance and dramatic skits.
• Establishment of a community network and field outreach program to identify OVCs and other vulnerable people who are in critical need of support.
• Recruiting and training volunteer counsellors.
• Mobilizing support from key community stakeholders to assist vulnerable people through the provision of land for orphanage centres, food production, and a school; donations of money, livestock, food, clothing, scholastic materials, etc.; and, the construction of homes and water tanks.

One of PARDI’s most important functions is delivering HIV/AIDS prevention, care and support services as well as psycho-social, emotional and material support directly to those in need in their homes and community. The vast majority of the people PARDI assists are too poor to obtain care and treatment from health care professionals and they lack access to even the most basic medication, nursing care, and relief of symptoms. By reaching out to vulnerable people and treating AIDS like any other social, health and welfare issue in the community, PARDI also helps reduce the stigma, isolation and discrimination attached to the disease, so that those affected and infected are encouraged to openly seek the help they need. This, in turn, reinforces community awareness of AIDS, which contributes to HIV prevention efforts. That said, the critical problem is usually not so much the disease itself as poverty. Thus, PARDI’s outreach services also provide an entry point into the community to tackle the most pressing human security issues through meaningful and sustainable development, which is crucial to prolonging survival with HIV infection, helping people cope with AIDS and, for a myriad of complex reasons, helping prevent HIV transmission in the first place. PARDI also nurtures self-reliance among vulnerable people affected and infected with AIDS by building their capacity to support themselves. This is achieved through the creation of income-generating activities, education and vocational skills training, training community members in improved agricultural methods, and the distribution of high yield seeds, anti-mosaic cassava cuttings, goats and chickens. These activities are especially important for OVC because they discourage children affected by AIDS from fleeing to urban centres in search of work. Research (Rakai Community-based AIDS project 2004) suggests OVC survive better in rural areas than urban centres.

PORTRAIT

OF A

VOLUNTEER

Yusuf Matovu has a profound empathic understanding of the desperate struggle of children who have lost their parents to AIDS. He has personally experienced their hopes and fears. Yusuf, 27, has no recollection of his own parents because they died of AIDS when he was so young.

He grew up on the streets of Mbarara in southwest Uganda until the authorities caught up with him and he was imprisoned. Since he was extremely impoverished and didn’t have money to pay for an education, he was made a dependant of a school in Mbarara. He managed to complete S4 when his school sponsorship stopped. He tried growing food to pay for his school fees but cultivating the land consumed so much of his time he eventually had to drop out. For the past five years Yusuf has devoted his life to improving the lives of vulnerable people infected and affected by HIV/AIDS in Rakai district’s Kabula county. From cultivating food for orphans, to counselling PWAs in their home, to carrying the coffins of a deceased community members several kilometres for their burial, Yusuf is eager to carry out any task required of him. “My family is everyone; everyone is my family. I realized I was born to serve,” he says.

Volunteer counsellors: the backbone of the organization

PARDI actively recruits volunteer counsellors from the communities in which the people in need reside to provide these services and they are the backbone of the organization. Their most critical tasks are identifying vulnerable people; mobilizing the community; disseminating information and support; acting as foster parents to orphans and checking in on them regularly, which enhances the coping mechanisms of CHHs; and, being available when crises occur. There are several significant benefits to using community volunteers in the provision of services. In addition to maximizing community involvement and ownership in PARDI’s programs and making the most of existing resources, involving volunteers promotes a sense of shared responsibility in addressing the problems associated with the epidemic. The recruitment of volunteers encourages sustainability over time because community members are poised to take over in the event CBO phases out its operations. Volunteers also have the opportunity to raise their profile in the community as well as acquire valuable skills applicable to other areas of their lives and experiences that potentially can help them secure paid work. Moreover, they are in a better position to help their own families and themselves if they become affected by AIDS. All counsellors must be over 18 years of age and they must have obtained at least an ‘O’ level education. PARDI also selects volunteers who are known to be very responsible people, who have demonstrated they can support themselves and who, preferably, own land that can be used to grow food for distribution to beneficiaries. Prior to becoming a PARDI counsellor, volunteers undergo extensive training that takes anywhere from one to three months depending on resources available. They are also required to complete refresher sessions every six months to help them keep abreast of the latest developments in HIV/AIDS treatment and care. Each counsellor keeps records of the location and names of clients in each household they visit and their number of visits to the home. The number and frequency of their visits varies depending on the severity of the challenges each family faces and the number of clients the counsellors support.

In assisting vulnerable people infected with and affected by the epidemic, PARDI’s endeavours to consider the whole person — the mind, body, spirit — and to address his or her needs using an integrated, multi-sectoral and holistic approach. Therefore, in addition to up-to-date information on care, treatment and prevention of HIV/AIDS, counsellors learn a variety of skills to address the needs of their clients, including:

• Strategies to help people infected with and affected by HIV/AIDS help themselves.
• Techniques to help clients cope with problems of stigma and discrimination, guilt, anger, blame, rejection and isolation as well as multiple deaths in one family, and the enormous strain of repeated ill health, death and bereavement.
• Tools to assess the critical needs of clients and to provide for their material, emotional, psycho-social, practical, nutritional, spiritual and financial needs.
• Nursing care methods and advice on accessing medical services and supplies.
• Techniques to help clients prepare for the future, regarding inheritance, child care, economic survival and other long-term concerns.
• Mobilization and leadership skills.

PARDI donates goats and chickens to vulnerable people for income generation and to improve food security.

HIV/AIDS sensitization and awareness

Although beliefs and attitudes about HIV/AIDS are changing in Uganda, some of PARDI’s clients still do not know much about the disease. Fear and confusion over the devastating epidemic still exist, fueling prejudice, discrimination and rejection. Those who have HIV or care for a family member who has AIDS are still perceived by some to be threat to themselves, their families and the wider community. Others are convinced HIV/AIDS is the result of witchcraft or angry spirits. Sensitizing communities, families and individuals about the disease is therefore a critical component of the work of volunteer counsellors not only because awareness significantly reduces the stigma attached to AIDS, it is also crucial to prevention because it helps people understand what they need to do to safeguard themselves and others against the virus.

Volunteer counsellors help dispel myths and misperceptions as well as correct wrong information about HIV/AIDS to ensure clients have an accurate understanding of the virus, disease and its transmission. They also identify the risk factors for HIV and help clients understand those aspects of their behaviour needing change to protect themselves and others and try to motivate them to achieve these changes. They refer clients to voluntary counselling and testing services at nearby health centres and provide pre and post-test counselling. They assist those living with the virus and their family members adjust emotionally to HIV/AIDS, help out in a variety of ways with practical and material problems that arise, refer clients to other potential sources of help, and mobilize resources when possible. Volunteer counsellors also encourage people to think about the future and to make appropriate plans for themselves and their dependents.

Prior research in two other districts of Uganda (Gilborn, Nyonyintono, Kambumbuli and Jagwe-Wadda 2001) found that most older children want parents to reveal they are HIV positive and parents are also predominantly in favour of disclosing their HIV status to their children because they value honesty, talking about prevention and being able to prepare for the future. PARDI staff report that parents are reluctant to disclose their HIV status to their children unless a counsellor intervenes early and provides support with and advice about discussing this difficult issue with their children.

Self-help

Since PARDI’s resources are limited and often in short supply, the organization isn’t always in a position to provide material or financial support. But volunteer counsellors can help PLA live positively with HIV/AIDS by encouraging them not to give up hope, to take care of their physical health and well-being, and to seek support from others. Volunteers often provide advice to PWA on how they can safeguard their health through healthy lifestyle choices such as staying active and busy; eating a well-balanced diet; reducing anxiety and coping with stress; maintaining good hygiene; and, avoiding unprotected sex, smoking, heavy drinking and recreational drugs. A growing body of scientific evidence suggests these self-help strategies yield direct health benefits as well as psychological benefits. All activities that prolong the life of PWA and their ability to care for themselves and their families obviously also benefit their children.

Volunteer counsellors assist an orphan who is sick with malaria.

Source: PARDI, personal communication, Hagaba Richard, January, 2006

Orphanage centres

PARDI works with 13 orphanage centres, which also play a vital role in the provision and delivery of outreach services to vulnerable people infected with and affected by HIV/AIDS and the communities in which they live. In most cases, community members have donated the land and facilities for the centres.

These centres are easily accessible community gathering and meeting places for OVC, PWA and the neighbourhood. They tend to become a refuge especially for OVC because volunteers who operate the centres make a point of creating an environment in which children and others infected with and affected by HIV/AIDS feel safe, secure, and free from humiliation and stigmatization as well as active citizens of the community.

The children develop close relationships with other OVCs and regard them as brothers and sisters. An important activity of the centres is the facilitation of children’s performance art groups, which educate through song, dance and dramatic skits. Some of the centres are equipped with rudimentary facilities to house orphanage centre volunteers and a limited number of OVC who may need emergency shelter. Most of the centres also have gardens that produce food for distribution to vulnerable people and which are also used to teach improved agricultural practices to OVC and others. Some of the centres also provide primary education and vocational training to OVCs and are equipped with water tanks where the nearby community can access safe drinking water. Since the vulnerable people PARDI are too poor to have telephones, the centres are also important communication centres, where vulnerable people can express their needs and learn about social services and other resources they might need to access.

Home-based care

A new holistic and integrated approach to home-based care (HBC), introduced a year ago by some of PARDI’s volunteer counsellors includes: nursing care; nutrition; promotion of the living; counseling; ART, when available; physical therapy; AIDS management; memory book; will making; prayers; and, management of income generating activities.

Memory books — put together by parents, their children and others — contain photographs, documents, anecdotes, sketches, mementos and other family information and messages that the parent thinks is important to include. Memory books are designed to help PWA help their children cope with bereavement. Memory books also provide children with a permanent link to their parents and the extended family when they are orphaned, thus addressing an important psycho-social need for both PWA and the orphans they leave behind after their death.

Currently, very few people in Uganda have prepared wills prior to their death. Although writing wills is not a traditional cultural practice in Uganda, it is believed that doing so may reduce community conflicts that arise after the death of a PWA, such as property grabbing, which is explored more on page 43 in the section “Children in Jeopardy: The impact of HIV/AIDS on children”.

The Ugandan government distributes a limited supply of free antiretroviral drugs (ARVs) to some of the PLAs PARDI assists. Generally those who are receiving ART respond very well to the treatment, especially with encouragement from volunteer counsellors. PARDI volunteers report that sometimes patients consider quitting the treatment due to unpleasant side effects, but counsellors persuade them to continue taking the medication and eventually their health improves significantly. It’s difficult to accurately establish the number of people who are receiving ART in the counties PARDI operates since reliable statistical information is not available. PARDI estimates only about four per cent of those who need the life prolonging drug treatment are currently receiving it. The CBO confirms what analysts have suggested that in Uganda, like other nations in sub-Saharan Africa, “the demand for treatment access from the wealthy ensures that [ARVs] are available — often in an ad hoc, unregulated fashion” ( Jackson 2002: 75). PLAs who have to pay for the medication often are forced to exhaust their savings and sell off all of their assets to purchase ARVs. But once their funds disappear, so do the drugs. If the medication was available for free to all those who need them, “the disease would be more manageable, they would live longer and their children would have a brighter future,” says volunteer Yusuf Matovu (personal communication, Jan. 22, 2006).

Guardians

This guardian agreed to care for six orphans as well as her own baby.

A guardian comforts a child who recently lost both of his parents.

Another important task of volunteer counsellors is identifying and linking guardians with orphans. This is especially important since research (Rakai Community Based AIDS Project 2004) shows that the coping mechanisms of OVC are enhanced by the presence of an adult in their life even if that adult is physically unable to care for them. Children are only matched with guardians if they do not have a family member who is able to care for them. Whenever possible, counsellors will collaborate with parents prior to their death to arrange a suitable guardian to ensure future care for their children. Some of the guardians already have families, but others do not. They usually live with the children. Most guardians are women because they are more likely to agree to shoulder the responsibility for caring for orphans and therefore are easier to recruit. Many guardians are in poor health and are themselves living with AIDS. Children often take over household duties and care for guardians who are living with AIDS when their health worsens so it’s a mutually beneficial relationship. In fact, some guardians have even credited the children with saving their lives. PARDI estimates only about 27 per cent of the orphans it assists have guardians. Generally, only the youngest orphaned children are matched with guardians. This is primarily because there are too few guardians available to fill the need; however, there are some children, about 20 per cent of those PARDI supports, who refuse to have a guardian care for them because they fear they will be mistreated. In an effort to safeguard against mistreatment, counsellors only recruit guardians from within the community. They carefully monitor prospective guardians prior to recruiting them and after they assume responsibility for caring for children. Counsellors are instructed to report any problems or suspicions they have of mistreatment or abuse to PARDI supervisors.

Health Outreach

Volunteer counsellors also help PARDI carry out its health outreach program by mobilizing the attendance of community members. PARDI offers the health outreach services in collaboration with the district health department. PARDI sets the time and venue for health outreach activities, the district provides a vehicle and health care professionals donate their services for free. There is still a cost associated for PARDI, however, as the CBO is required to pay for fuel and maintenance of the district vehicle for the duration it uses it. The program is offered on an ad hoc basis, depending on the availability of a district vehicle and health care professionals and whether PARDI has the required resources. A variety of services are offered, including health care check ups, basic first aid, and immunizations while more complicated cases are referred to the nearest hospital. Some medication is available but only Panadol, a painkiller similar to Aspirin, is distributed for free. Health care professionals also counsel the community on how they can safeguard their health through simple measures such as boiling water, maintaining personal hygiene and cleaning pit latrines.

Networking helps maximize limited resources

Another priority for PARDI is networking with other CBOs and NGOs that are providing services to vulnerable people in Rakai district. To that end, PARDI is a member of Rakai Network for AIDS Service Organizations (RANASO) and Forum for NGOs in Rakai District (FONIRAD). These organizations allow PARDI to share information, experiences, and training. It allows PARDI to educate others about the needs of its clients and to keep abreast about the sort of services other organizations are providing and where their activities are taking place. This helps the organizations coordinate their activities so they avoid costly duplication. Through these networks, PARDI has access to valuable information from newsletters, publications and research surveys that can help the CBO carry out its work more effectively. Members of the networks often conduct joint training sessions, which help them build the capacity of their organizations more cost-effectively.

Photo courtesy of Ashinaga Rainbow House

Members of Samanya Orphanage Centre choir and drama group enjoy the company of a Japanese volunteer at Ashinaga Rainbow House in Kampala.

Another priority for PARDI is the continued growth and expansion of its network of contacts and partnerships with well-wishers from abroad, which is usually accomplished by chance encounters, making a deliberate effort to broaden awareness about the organization and the plight of the vulnerable people it supports whenever the opportunity arises and word of mouth. The CBO recruits most of its foreign volunteers this way. For instance, PARDI hosted a volunteer from Japan at Samanya Orphanage Centre for a month, who, in turn, hosted a group of two dozen of so children from the centre’s choir and drama group. Recently, PARDI met a representative from the United Nations Development Program, who assisted the CBO register with a United Nations Online Volunteer Program that provides professional services free of charge.

Rights-based paradigm shift

PARDI staff compare the quality of drinking water at Samanya Orphanage Centre before and after a water tank (bottom photo) was constructed. According to the rights-based approach, children and orphanage volunteers forced to consume the water in the green cup were denied a basic human right.

PARDI is currently in the process of a paradigm shift in how it approaches programming, making a transition from a needs-based to a rights-based model of development and assistance. The shift is recognition, implicitly at least, of the failure of dominant modernization development practices to understand and address the structural barriers to poverty. Increasingly, instead, donors and NGOs are turning to a rights-based approach to development programming as a means of more systematically analyzing the causes of poverty, exclusion and marginalization. Thus, it is the donor and development community that is driving this paradigm shift, which presupposes that poor people are poor because they have been denied or have been unable to access rights and freedoms, which are necessary to living a dignified life.

It is believed the rights-based model has the potential to empower the poor and marginalized through strategies that enable them to recognize the rights they are entitled to such as the right to food, the right to health care, the right to shelter, and so on. Such strategies must address the basic needs of the most vulnerable, identify the political, economic, social and/or environmental conditions that create barriers to accessing rights, and provide mechanisms to overcome those barriers. These barriers can be related to the knowledge, skills and attitudes of those whose rights are denied as well as political, legal, administrative, social-cultural, economic and/or environmental in nature.

Internationally, the seminal human rights document is the International Bill of Right and this was later supplemented by other conventions and declarations, the most relevant for PARDI’s work being the United Nations Convention on the Rights of the Child (UNCRC). Uganda is a signatory to both. Advocates of children’s rights in Uganda can also draw on the Constitution of Uganda, the Uganda Children Act and other laws related to the rights of children. PARDI referred to the UNCRC and other relevant laws in November 2005 when it approached the Ugandan Human Rights Commission for assistance in lobbying and advocating on behalf of the children and other vulnerable people it supports. The organization was told the Commission would “look for easy access avenues to assist PARDI’s beneficiaries enjoy their basic human rights,” (personal communication, April 9, 2006). Key provisions of the UNCRC which can assist PARDI and other service providers, communities and policymakers in their efforts to assist children infected with and affected by AIDS, include:

Article 3: includes the provision that the best interests of the child shall be a primary consideration in matters concerning children

Article 5: recognizes the responsibility of the extended family, community or legal guardians to provide for children in a manner consistent with their evolving capacities

Article 8: addresses the right of children to preserve their own identity, including their name and family relations

Article 12: recognizes children’s rights to be heard in any proceeding that concerns them

Article 18: recognizes the responsibility of the State to support parents and legal guardians in their child-rearing responsibilities and to develop services for the care of children

Article 19: concerns the protection of children from abuse, neglect, mistreatment or exploitation

Article 20: concerns the responsibility of the State to provide special protection for children deprived of their family environment

Article 21: addresses safeguards around adoption

Article 24: recognizes the right of children to the highest standard of health and access to health services

Article 25: concerns the periodic review of the situation of children placed in care

Article 27: recognizes the right of children to an adequate standard of living

Article 28: concerns the right of all children to education

Article 32: addresses the protection of children from economic exploitation

Article 34: asserts the right of children to protection from sexual exploitation and abuse.

My field practice was arranged as a result of just such an encounter with a student at Makerere University who often takes the opportunity to spread the word about PARDI with foreigners he meets on the Kampala campus.

IN THEIR WORDS, BY THEIR HANDS

The most pressing human security challenges of children affected by HIV/AIDS as revealed through their drawings, letters, skits and songs

“We are suffering because our parents died of AIDS.”

-Field research study respondent, Kooki county, Rakai district

The overall goal of a field research study conducted in January 2006 in Kooki county of Rakai district was to identify the most pressing human security challenges facing OVC assisted by PARDI in an effort to diagnose effective strategies to address those challenges. The study aimed to achieve the following objectives:

• To give participants the opportunity to express what it is like to be a child affected by AIDS through their personally conceived and created artwork

•To allow OVC to reveal their personal, subjective realities and experiences from their own perspective

•To use a medium that gives OVC the opportunity to express themselves directly

•To create a collection of artwork by OVC assisted by PARDI that could possibly be used as a future fundraiser for the organization

An orphan participates in the research project.

Paper and art supplies, consisting of pencil crayons, wax crayons, watercolour paints, pastels, and felt markers, were distributed to Samanya, Ntalama and Kijako orphanage centres. OVC who access services at the centres were extended an invitation to participate in the research project by conceiving and creating artwork using the paper and supplies that were provided. The children were given very few instructions, which were delivered to them in their own language by volunteer counsellors. AIDS has had a profound impact on the lives of all of the children who participated in the study and they simply were asked to use the medium to express their experiences, thoughts and feelings. The children who chose to participate had two or three days to conceive and create their artwork before it was collected at Samanya Orphanage Centre. Unfortunately, artwork from Kijako orphanage centre was not made available by the conclusion of the study.

Since most of the children PARDI supports do not speak English, it is difficult to communicate with them without a translator. It was hoped that by choosing art as a medium for their self-expression, the children would have the opportunity to express what they think and how they feel about their unique circumstances as children affected by HIV/AIDS more directly. Many of the participants chose to express themselves in text written in their mother tongue, Luganda, with accompanying drawings. A plausible explanation for this is the OVC who participated in the study felt more comfortable describing their challenges in writing because they do not normally have access to art supplies and they aren’t accustomed to expressing themselves using that kind of medium. For instance, none of the children chose to use the paints that were distributed because, according to one volunteer counsellor, no one knew how to use them.

Children create artwork for the project at Samanya Orphanage Centre.

A total of 157 responses were received from children ranging in age from four to 19. Eight-seven of the participants were female and 44 male. The sex of 26 of the respondents could not be determined. All of the survey participants chose to respond in written text. Seventy of the respondents wrote in Luganda, 54 in English and 33 in both Luganda and English. All but one of the respondents also included with their text at least one illustration, which they drew themselves or had a friend or sibling draw for them. Almost all of the drawings illustrate something mentioned in the text. Just over a third of the respondents drew real life scenarios and/or illustrations of people suffering some sort of distress. Five of the participants drew more sophisticated cartoon-like illustrations with callouts describing what a person in the illustration is thinking, feeling or saying.

Responses were consistent and similar in tone and content. All of the participants either identified or described significant human security challenges they confront on a regular basis and most stressed their struggle for basic necessities of survival and/or access to education. Table 3 indicates the needs and challenges expressed by the respondents. An overwhelming number of respondents lack bedding, bed sheets, blankets and a mattress to sleep on and over half lack clothing. Close to half do not have decent shelter. Some of the children reported living in temporary mud and grass-thatched homes that leak and others said their homes were either had collapsed or were on the verge of collapsing.

Almost a third of respondents said they do not get enough food to eat. Sixteen per cent do not have mosquito nets, 10 per cent do not have land for growing food and another 10 per cent would like a water tank because they have to walk such long distances to fetch water. Access to education is also a problem for the respondents. The Ugandan government introduced legislation in 1997 mandating universal primary education (UPE) and waiving school fees. But some children are still unable to attend because they can’t afford scholastic materials and uniforms, which are required for them to go to school. Some respondents of the study described the specific items they lack which preclude them from attending school such as “school fees”, “scholastic materials”, which are supplies such as pens, pencils and books, school uniforms, and “school uniforms.” Others simply expressed a need more generally for “educational support.”

In addition to expressing their own needs, some of the respondents mentioned items needed by orphanage centres where they access services and receive support. “We don't have the necessary equipment, such as musical instruments, for our drama presentations in different areas when we are sensitizing the public about HIV/AIDS. We lack loud speakers, yet we perform to large gatherings. Another problem is lights. We don't have lamps. We would like to perform even at night. Another problem is that we don't have enough buildings. We would like to construct some more buildings at Samanya. We'd also like mechanical tools to repair motorcycles and bicycles. We are pleading to you to give us some bicycles because bicycles help us reach far when we want to spread information to our fellow members. Another problem is we don't have a vehicle to move us around when we are sensitizing the community about HIV/AIDS,” explains a 15-year-old boy.

Illustration 1

Illustration 2

Illustration 3

Illustration 4

Illustration 5

Illustration 6

Illustration 7

Illustration 8

Illustration 9

Illustration 10

Many, such as the child who drew Illustration 1, included a drawing of the basic needs he lacks; and, others, like the boy who sketched Illustration 2, included his family in his illustration. In addition to expressing their needs, some of the children suggest that their situation is so “terrible” today is because they no longer have a mother or father. “We are so many orphans and we are still young. We are lacking parental care,” writes one child. Another explains: “Our father died and even our mother died. They left us when we were still young and now we are in hands of counsellors. They act as our parents.” Underneath the drawing of girl next to a small hut are the words: “This girl is an orphan who is living in this house alone.” Another writes next to an illustration of eight children wielding hoes, “We are digging so that we can get food because our parents were lost long ago.” Some of the children point out their parents sold the family’s land and assets before they died, leaving the children with nothing.

Other children report that they are living with one parent or a relative who is having a difficult time supporting them because they are so impoverished, weak or elderly. Says one 14-year-old girl: “My dad died when I was very young. I don’t remember what he looks like and I’m the oldest in the family. My Mom is very weak and there are six in our family. We have no home. Our uncle assisted us by giving us a shack to live in, but now our uncle wants us to find our own home. But our mother lacks money and energy to build a house. Even if we had the money, we don’t have any land to put a house. We also have no food or clothes.” A 12-year-old girl explains, "Both of my parents are dead. By the time they died, we were left with nothing. We had no clothes or house. We live with our aunt, who is very poor.” Another girl illustrates her grandfather beating her grandmother with a stick. “They fight because of food,” she writes. In another illustration, a grandmother laments: “I’m so unfortunate. These orphans are so hungry yet I have no food. The house is ramshackled and it’s about to collapse. But I can’t build another house. The orphans have nothing to eat. I don’t have money for food and clothes. When it rains, we don’t eat because the kitchen leaks and gets soaked with water. I’m asking for assistance because I can’t manage. I’m dying because it’s such a burden. I stopped the orphans from going to school so they could look for food to eat in the villages. Now, I’m asking for assistance because we sold off the piece of land we had to pay the medical expenses for the late parents. Now, the food we eat, it’s the children who get it by asking for it from villagers.”

Other children, such as those who drew the pictures in Illustrations 3, 4 and 5, opted to use non-verbal gestures, specific to their culture, to convey what they need and how they feel. Illustration 3 signifies famine because the child in the drawing is too weak from hunger to lift her head. “We are facing famine. We want food. Famine is terrible in our family,” says the 13-year-old girl who drew the picture. The girl in Illustration 4 has her arms stretched out with her palms facing upwards, which means she is appealing for help. The character at left in Illustration 5 is touching his face, which signifies he is feeling sorrow because he is remembering his deceased parents. The girl at right is covering her mouth with her hand, which indicates she is hungry and asking for food.

Some children, such as those who created Illustrations 6 and 7, chose to illustrate scenarios that PARDI staff confirms were likely inspired by real life events. The Luganda in Illustration 6 reads: “I’m an orphan both my parents died. Only the children remain and we don’t have food.” The 12-year-old boy who drew Illustration 7 says he “faced a lot of problem” after the death of his parents. “I stayed with my grandparents but they are very weak. After being dumped at my grandparents, I moved in with a guardian but the person who took me in is also very weak,” he writes. The boy describes not only a variety of challenges facing people affected by HIV/AIDS but also what they think and how they feel about their problems. According to the text that accompanies the drawings in his illustration (below, from upper left corner), the boy in illustration is thinking: “My situation is very, very bad as if I’m the one responsible for killing my parents and other people.” The elderly woman is thinking: “If I died now, who’d take care of my grandchildren.” The elderly man at the bottom of the illustration says he feels as if he “has the weight of the world on his shoulders.” He is also saying: “I hear there are people who assist orphans, Can they assist my grandchildren? This world can torture people.” The call out underneath the illustration of the graveyard reads: “The earth has taken all of my family. My family has all disappeared in the soil. My father, mother, grandparents, brothers and sisters.”

The children who drew Illustrations 8 and 9 focused on what they think they need to do to escape poverty and their desperate situations. The 17-year-old

boy who drew Illustration 8 says he lost both his parents in 1994 and two of his brothers in 2003. “I finished P7 but I couldn’t continue to secondary school because I have no money. I see now my future is bleak. I see the world as if it is in a fog. I lack food. I wish I could go to vocational school to learn mechanics. I have no clothes, bed or bedding and no house,” he writes. The 14-year-old boy who created Illustration 9 says he also finished P7 and couldn’t afford to continue to secondary school. “I’m an orphan. Since I can’t afford school, I’d like to go to vocational school to learn how to repair motor vehicles and motorcycles. I have no house. The house I stay in is very poor. I have no bed and beddings and clothing. We lack basic necessities like soap, salt and food. We also need a bicycle to fetch water and to carry sick loved ones to the hospital. If I were to become a mechanic I could be self-reliant and support myself and my siblings in the future.”

The child who drew Illustration 10 also makes reference to the difference learning a skill would make in the life of an OVC. According to the text that accompanies the illustration, the artist also describes some of the human security challenges facing people affected by HIV/AIDS as well as what they think and how they feel about their circumstances. Clockwise from top left: The man smoking the pipe is saying, “Ladies and gentlemen I smoke this pipe to reduce my worries about the famine and I’m dying of hunger.”

The woman with he pink skirt is saying, “My kids abandoned me yet I’m old and sickly and my house is about to fall down on me. I am also famine-stricken so I seek assistance.”

The two characters around the cooking stove are saying, “Help us, we don’t have anything to eat. We go to sleep hungry. All we have to eat is bananas that are not meant to be eaten, but they are used to make wine.”

The character on the purple bed is saying, “Friends I’m dying. HIV is killing me. I got it from my mother and I have no support.

The child with orange shorts and the yellow shirt is crying with outstretched hands and saying, “Friends, my parents died of HIV/AIDS. I don’t have any food so assist me.”

The man with the purple shirt, green pants and batch of bananas is thinking, “I don’t have money to pay school fees for my children so let them stay at home. Meanwhile, I’m looking for money in the village.”

The woman with the pink dress sitting on the stool is thinking, “I’m so badly off. Had I known how to sew, I think I’d be able to sustain myself.”

Children from Samanya Orphanage Centre drama group perform a skit that dramatizes the effect of the HIV virus on the body

Samanya drama group actors mourn the loss death of another character from AIDS.

The children’s performances are highly accessible, engaging and entertaining because they are created, in a culturally-contextualized fashion, specifically for a target audience. Put another way, the children’s songs and scripts are relevant, appropriate and suitable because they are designed for the community by community members who are intimately familiar with the culture. Even though the subject matter can be grave and even gut wrenching at times the performances are infused with humour so audiences can enjoy themselves as they reflect on what are often difficult and painful issues. Counsellors, in collaboration with child performers, compose the lyrics and scripts. The songs are accompanied by traditional drumming, which has been passed down from generation to generation

The children’s skits dramatize how the virus attacks the body’s immune system, the physiological effects the disease has on the body, and the devastating impact the epidemic has on families. The performances stress abstinence, monogamy and the use of condoms to prevent the spread of HIV/AIDS. The performers also demonstrate what PWAs need to do to prolong their lives such as eating a healthy diet, taking medications for opportunistic infections (OIs), keeping a positive attitude and talking openly about their illness.

In addition to curbing the spread of HIV, the drama and choir groups promote the emotional and psycho-social well-being of children who participate in them. Being part of the drama and choir groups boosts the children’s self-esteem, enables OVC to explore their fears and anxieties in a constructive way, and allows them to sensitize the community about the unique challenges they face, including their susceptibility to abuse, exploitation and discrimination. Issues such as property grabbing, mistreatment of orphans by guardians and relatives, access to education, and girls being pressured into early marriages or the sex trade to help support themselves or their families are some of the themes explored in the skits and songs. Listed below are three songs and two scripts performed regularly by Samanya Orphanage Centre’s Drama and Choir Group. (The three songs and a couple of short clips of one of the group’s skits are included on the CD that accompanies this report).

A singer from Samanya choir performs a song that urges listeners to change risky behaviours.

Song No 1: You Never Know I Might Also Fall Victim (Osanga Nange Alintwala)

Chorus (repeated twice)

There’s wailing and weeping from every corner

What AIDS has done to us is really frightening

You never know, I might also fall victim

We are losing hope

You never know, I might also fall a victim

(Chorus)

Please utilise the female and male condoms, they are very effective once used correctly, that way you will overcome AIDS

Young people, widows and orphans get to live a very short life span before they are also carried away by the scourge

(Chorus)

You should learn to avoid bad-risky influences like all-night discos, prostitution, pornographic films and drunkedness because they contribute to the spreading of HIV and AIDS

Avoid sharing sharp instruments like needles and razor blades

(Chorus)

You should not engage in sexual relations with your partner before going for an HIV test because you can never know what could happen

(Chorus)

As I bid you farewell, I request you to put everything I have said into action such that HIV and AIDS does not rob us of our lives

(Chorus)

Song No 2: The Scourge Came For Us All!

(Wowe Yaye Na Twagirwa)

Samanya choir members use their music as a healing tool, to come to terms with their grief.

Chorus (repeated twice)

Goodness, AIDS came to finish us from the earth, the elderly,

youth and babies have all been snatched away. The solution to this would be to return to God. He is very angry with us

Did you know that AIDS came very determined to wipe out the whole earth

AIDS built a permanent house called ‘abstinence’ with a caretaker as the angel of death? So once you decide to enter that house, you will come face to face with him

(Chorus)

A saying goes that the tree seedlings are the future of a forest but our youths and babies have all died, we are wondering where tomorrow’s citizens will come from.

(Chorus)

Let us join hands; let’s change our behaviours especially through abstinence .

(Chorus)

Song No 3: What Crime Did We Commit As Children?

(Ffe Abato Twaza Sango Kii Elyo?)

Samanya choir sensitizes others about the problems of OVC.

Chorus (repeated twice)

What kind of crime did we commit, which has tortured our lives to the extent of having no peace

 We are raped by men

(Chorus)

Traditional healers sacrifice us

(Chorus)

Our mothers throw us in pit latrines

(Chorus)

Our parents throw us along the roads

(Chorus)

Play No 1

Scene 1: A boy meets his friend whom he convinces to take some alcohol. They then go to a bar where they find prostitutes selling alcohol.

Scene 2: They buy the alcohol and sit around with prostitutes sipping some drinks. They later on, pay the prostitutes and have sex with them. One of the boys comes back on the stage with fever and itching all over his body.

Scene 3: His friends find him later and they assure him that he’s been the target of witchcraft. They take him to a traditional healer who is also on the stage. He informs them that he will inject the patient and administer medicine through body cuts. He asks for payment of a white goat, white clothing and 200,000 USh.

Scene 4: The patient goes home to sell a plot of land in order to get the money for the witch doctor. But his health worsens and later he and his friends, who seek help from the witch doctor, die.

Note:This play shows how HIV and AIDS rapidly spreads among people in the rural communities of Uganda who are uninformed about the epidemic.

Samanya actors dramatize how witch doctors and traditional healers sometimes take advantage of people infected with HIV.

The actor second from left plays a character who contracts HIV after leaving her home due to mistreatment.

Play No 2

Scene 1: A man marries a woman who gives birth to a baby girl. This woman later dies. The husband marries another woman who also gives birth to a child. The orphan falls prey to torture by her stepmother. This orphan is overworked by the stepmother.

Scene 2: The poor orphan decides to run away from home but meets a man along the way who rapes her and infects her with AIDS. She later dies.  

Note:This play involves a lot of domestic chores which the orphans go through that are forced on to them by their guardians and later they fall victims of HIV and AIDS.

Song Immediately after play

Oh my God, we have fallen victim to this incurable disease. HIV/AIDS, this epidemic tortures people both young and old. It has also greatly hindered development.

We had a variety of diseases. Where are they now? Syphilis and polio among others, but many of them came and were wiped away. But whoever opened the door for this scourge has never closed it.

As the field research study detailed in the previous section and case studies presented in this section reveal, HIV/AIDS has a profound impact on the well-being of children. Like millions of children in sub-Saharan nations, who “are missing parents, siblings, schooling, health care, basic protection and many of the other fundamentals of childhood because of the toll the disease is taking” (UNICEF 2005), OVC in the counties where PARDI operates are vulnerable in most areas of their lives. For most of these children, survival is all-consuming struggle, dwarfing everything else. OVC, as well as their parents and the guardians who care for them, are preoccupied most especially with meeting their most basic necessities of survival — adequate shelter, bedding to sleep comfortably at night, food, clothing, safe drinking water — as well as being able to go to school, according to the field research study and prior research (Gilborn, Nyonyintono, Kambumbuli and Jagwe-Wadda 2001; Rakai Community-based AIDS Project 2004; Shuey et. al 1996: Foster et. al 1995; Foster et. al 1997; Hunter and Williamson 1998; Hunter and Williamson 2000). Addressing these needs, in turn, is important not only for their physical health, it is also critical to the emotional, psycho-social, and spiritual well-being of children.

Dr. Nyanzi Ismail, a lecturer in the Language Department at Makerere University and a Ugandan linguistic expert, was commissioned by the author to translate the songs and skits into English. The Luganda text is included in Appendix C: Field Activities, pages 95-96.

Despite the efforts of some community members to assist children affected by AIDS, there are also cultural reasons why children are not receiving support they need, according to Milly Baiga Katongole, HIV/AIDS coordinator for Concern’s Rakai Program. “In African culture, children are seen as valuable only after they are grown up … and attitude of some, [particularly with regard to HIV-positive children is], we’re wasting our time looking after children because they are going to die anyway.” Nationally, she adds, OVC “are considered a problem of NGOs, but no one thinks of it as a government problem. The needs of children are always considered last” (personal communication, Oct. 12, 2005).

Last fall, UNICEF and UNAIDS admitted that children affected by AIDS have been missing from global and national policy discussions on HIV/AIDS and an overwhelming majority, over 90 per cent, of children orphaned and made vulnerable by the disease do not receive public support or services. To address this shortcoming, the two UN organizations launched “Unite for Children, Unite Against AIDS”, a global campaign focusing on the enormous impact of HIV/AIDS on children and they are advocating for funding to be specifically targeted for children affected by AIDS. Unless this happens, an increasing number of OVC in Uganda generally and Rakai district in particular will be forced to live in unimaginable destitution and deprivation because the number of orphans is only expected to grow because. According to experts “ orphanhood peaks seven to 10 years after the peaks in HIV seroprevalence occur” (Gilborn, Nyonyintono, Kambumbuli and Jagwe-Wadda 2001 : 3).

Besides a relentless struggle for the basic necessities of survival, OVC face other interlocking challenges — reduced access to education, psycho-social distress, discrimination and mistreatment by guardians and relatives, limited access to health care, and increased vulnerability to HIV infection and other disease.

Figure 1 shows how these human security challenges are interconnected

OVC demonstrate incredible resourcefulness, creativity and resilience in coping with their challenges, but often the demands of daily life mean they must sacrifice one of the things they value the most — an education. PARDI estimates that approximately 60 per cent of the children it assists attend school. But that figure fluctuates depending on the children’s availability of food and scholastic materials. Besides an inability to pay for school fees and scholastic materials, other factors also prevent OVC from attending school. Some are forced to withdraw from school because they are pressed into service at home, taking care of siblings or a sick parent or guardian. One 12-year-old boy study, revealed to PARDI field workers the difficulty he has managing school along with his other responsibilities, including caring for his 75-year-old grandmother. “I have to go to school every day but also look for food and other household needs. I really want to study but the sickness of my grandmother cannot allow me. I have to prepare for her everything before I go away. But as she starts crying whenever she notices I am moving away, I feel touched and decide to stay. She looked after me from childhood, and I cannot neglect her at this crucial moment.”

Others quit school so they can provide for their family. Many children till their neighbours’ land in exchange for meager pay or food; others sell fruit, firewood or crafts. A 17-year-old boy, who became the head of a household of four at the age of 12 after both his parents died of AIDS, told PARDI field workers he quit school in P6 so he could focus on raising his two brothers and sister and to give them a chance for an education. “When our parents died, I thought of going to Kampala and living on the street, but I had a second thought that I would be crucifying my brothers and sister given the fact that I am their only immediate relative,” he told PARDI field workers. To support the family, the boy makes ropes and rears goats, the proceeds from which he says will be used to educate his brothers. Some children are too busy with household chores to spare the time it takes to walk the long distances to school and girls, in particular, leave school due to early marriages or pregnancies.

Besides improving their long-term security through increased incomes, getting an education also seems to be linked to the emotional and psycho-social well-being of OVCs as well as their parents and guardians. Said one 10-year-old girl respondent of the field research study: “If I were to go to school, everything would be OK. If one day I woke up and I was going to school, I’d be very, very happy and I’d forgot the sorrow I feel by the death of my parents.” Her sentiments echo an earlier study in two other districts of Uganda that asked OVC what made them happy. Invariably, the responses were “being in school” and “being with other children … conversely, missing school and doing poorly in school [were] associated with feelings of sadness and social isolation” (Gilborn, Nyonyintono, Kambumbuli and Jagwe-Wadda 2001 : 18). The same study (2001: 11) found that limited access to education is a source of psycho-social distress for parents and guardians of OVC, it follows that they would feel some peace of mind in the knowledge that their children receive an education.

PARDI reports confirm previous research in Rakai district (Nalugoda 1997; Sengendo and Nimbi 1997) that some orphans are discriminated against and sometimes suffer physical and verbal abuse from guardians and relatives who care for them. Orphaned children tend to have poorer clothing, are less well fed, and are required to do more household chores than the natural children of their caregivers. Some orphans are denied an education even as the biological children of caregivers go to school. A 12-year-old boy told PARDI staff he was made to take care of goats, tend to crops, and walk long distances to collect water after he moved in with his aunt and uncle. The child said his aunt, in particular, “treated him as an outsider” and when his cousins misbehaved he was blamed and brutally beaten by his uncle. After one such beating, the boy suffered a serious wound to his forehead but was still forced to carry a 10L jerry can of water on his head. “He was stressed to the extent he doesn’t love himself anymore,” says Hagaba Richard (personal communication, March 29, 2006). Some-times these children flee these homes to seek work in urban centres or they opt to live alone or with siblings in a CHH.

Other OVC, primarily girls, are lured into early marriages especially to older men not by choice but as a means of survival. As one 63-year-old fretted to PARDI field workers of her 10-year-old granddaughter, “I am wondering about Agnes’ future since she is still too young to get married, probably it would solve her problems. Other girls are exposed to sexual exploitation as child prostitutes and both girls and boys often encounter economic exploitation domestic servants or child labourers. It’s not uncommon, for instance, for them to refuse to pay children for their services. “We are joining hands in participating in a number of activities to earn a living,” a 16-year-old boy living in a child-headed household told PARDI field workers. “However, in return we are not paid. This is very discouraging.”

Another problem facing orphaned children is property grabbing, whereby inherited property is stolen from the surviving family members and heirs to whom it rightfully belongs. PARDI staff says this phenomenon is quite common and research conducted in two other districts of Uganda (Rakai Community-based AIDS Project 2004; Gilborn, Nyonyintono, Kambumbuli and Jagwe-Wadda 2001) suggests property grabbing is widespread, with women and children especially vulnerable. Paternal relatives are thought to be the most likely to steal inherited property, but there are also some fears that other community members and maternal relatives will do so. Since land is the most important survival resource for OVC, this is a serious matter because it further undermines the livelihood of households that are already weakened by the death of the primary income-generator.

Lost childhoods – how children cope in CHHs

Nkwasibwe Marion cares for her dying father Katula Charles.

Eight-year-old Nkwasibwe Marion crouches by her dying father's bedside. She peers anxiously into her father's eyes and gently takes his outstretched hand. Tenderly, she grasps the soiled, cotton bed sheet and wool blanket that are keeping her father warm and begins to pull them over his emaciated body.

But sensing he has a visitor, Katula Charles interrupts her. He struggles to steady himself on one elbow and moans, a series of agonizing groans that sound as if they are emanating from deep within his abdomen. He gasps for air and grimaces in pain as he props himself up on his thin foam mattress. His ribs protrude sharply from his gaunt, desiccated abdomen.

Although he is only 42 years old, he looks to be almost twice that age. The merciless disease, commonly known in Uganda as “slim” because of the wasting effect it has on the body, is visibly destroying him. He coughs violently; his hands shake as he labours to dab the spittle from his lips with his sheet. He slowly turns to see the stranger who has entered his tiny mud and grass thatched home, weakly shakes the hand that has been extended to him and nods his head in acknowledgment. But his eyes are hollow and vacant; he says nothing. He is too weak to utter even a single word.

Katula Charles relies entirely on his children for his care.

Drawing down savings, selling off assets

Katula Charles discovered he had AIDS three years ago when his second wife died from the disease. He sold his livestock and most of his land to cover the costs to travel several kilometres once a week to the local health clinic. There, he received treatment and medication, free of charge, for opportunistic diseases that are known to exploit bodies with weakened immune systems such as pneumonia, tuberculosis, bacterial and fungal infections.

He pleaded with his health-care workers to allow him to reduce the frequency of his visits to the clinic to every two weeks to cut down on his transportation bill. But when his funds eventually dried up, there was nothing he could do but remain at home and his condition deteriorated rapidly.

He couldn't afford to pay the fee for antiretroviral drugs, which have dramatically reduced AIDS and AIDS-related deaths in developed countries like Canada. But even if he'd had access to the costly medication, it might not have helped him. Some medical experts contend antiretroviral treatment cannot be effectively prescribed for people whose primary health and nutritional needs are not being met. To put it another way, if ART is to be effective in prolonging the lives of PLA in Uganda and the rest of Africa, there must first be significant reductions in poverty, improvements to nutrition, increased food security, secure livelihoods, increased access to primary health care and a basic quality of life.

On the dirt floor beside Katula Charles's bed are remnants of a meal of watery rice in a blue plastic cup; a filthy discarded salad dressing container serves as a makeshift water jug. Now bedridden, Katula Charles is completely dependant on his young children for his care. His oldest child, Nkwasibwe Marion, has become the de facto head of the household.

Nalongo Josephine cares for seven orphans.

Nakiwala Federes and her six grandchildren sometimes go without food.

Nalongo earns money selling cooked cattle hooves in a nearby market, but she doesn't make nearly enough to support her large family. She also rears two young goats, which she expects to sell when they are fully grown to supplement the family income. The family usually eats only one meal a day consisting of posho (a Ugandan food staple made from maize flour) and vegetables because they cannot afford meat.

After the collapse of their poorly constructed brick home, the family was forced to move into a tiny grass thatched house. The family has no bedding, and they are forced to sleep on the dirt floor. Large cracks in the walls of the home make the family an easy target for mosquitoes and increases their risk of contracting malaria. Like other families affected by AIDS, Nalongo Josephine and her children lack the basic necessities to live a decent life. Despite all the hardship, Kyolaba, the eldest girl in the family has aspirations of one day becoming a doctor.

Basic necessities hard to come by

Despite her wretched living conditions, Nakiwala Federes chuckles before revealing she isn't quite sure how old she is, although she is certain she is over 80 years of age. She has been caring for her six grandchildren for eight years ever since her own two children died of AIDS.

The family is lucky to eat one meal a day and some days they are forced to go without food. In exchange for food, the children often provide casual labour in their neighbour's gardens. But such work is hard to find. The family has no latrine or kitchen. Even though it poses a serious fire risk, the family's kitchen consists of a fire pit inside their grass thatched home. The children cannot afford the scholastic mate