Our lives aren’t like the lives of other children

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Our lives aren’t like the lives of other children

A documentation of the approaches, processes, best practices and lessons learned in Ethiopia on how to

combat HIV-related stigma and discrimination against children living with or affected by HIV and AIDS

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Photo: Lotte Ladegaard

Although SENSE has helped eradicate much HIV- related stigma and discrimination in Bahir Dar and Debre Markos, a great deal of thought has been given to the protection and confidentiality of those who volunteered their stories.

Everyone interviewed in the course of the re- search for this documentation has been thoroughly informed about the purpose and the intended use of their information and photos and has given verbal and written consent for their participation.

They are all aware that their stories, opinions and pictures are to be exposed in print and online.

Throughout the course of the research they have had the right to withdraw information, claim to be anonymous or not participate at all.

When possible, guardians and parents have also given their approval before their children have

been interviewed. The only exceptions are or- phans living in child-headed families or children participating in focus group discussions at school.

The latter are never identified by name.

Most interviewees were determined to share their stories for the betterment of others living under the same or similar conditions. To protect children living with or affected by HIV from possi- ble stigma and discrimination, however, only first names have been used in cases where children and their parents are associated with living with HIV.

The names of schools and community locations have also been left out to make tracing of individ- ual children and their relatives more difficult.

Captions have been omitted to avoid directly linking pictures of children with their names.

Note on the use of photos and names

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The SENSE project in short

In 2009, Save the Children, with the technical assistance of the Danish Institute for Human Rights, commenced the project Safe Environment and Non-discrimination in Schools in Ethiopia. The goal of the project, also known as SENSE, was to reduce HIV-related stigma and discrimination of children living with or affected by HIV and AIDS. Stigma and discrimination have been identified as being among the major obstacles for an effective national response to HIV and AIDS.

By addressing the local, regional and national levels simultaneously the project seeks to develop mechanisms and methods within the education system to reduce and report HIV-related stigma and discrimination. In addition to the education system, and in particular local school communities, the project involves the affected children and their families, civil society, people living with HIV associations, government structures and offices, the HIV/AIDS Prevention and Control Office (HAPCO) and the Ethiopian Human Rights Commission. It has also inspired Save the Children and the Danish Institute for Human Rights to address the international community to strengthen the linkages between HIV and human rights protection.

The SENSE project builds on a baseline study that assesses concrete manifestations of HIV-related stigma and discrimination, including a study of knowledge, attitudes and practices related to HIV and AIDS, as well as on an analysis of the Ethiopian policy and legal framework. These two studies provided important strategic information that has guided the implementation of SENSE and helped mobilise strong partnerships around the project aims.

Most of the activities built capacities and created mechanisms and tools to handle HIV-related stigma and discrimination, such as the Code of Action and Practice, which is still underway, as well as information and teaching materials for the education system. At the local level, this project facilitates educational and psychosocial support and referral systems for access to HIV services for children and families living with or affected by HIV and AIDS. While the

intergenerational Child Protection Committees support the most vulnerable children and reduce HIV-related stigma and discrimination, it is the participation of children, through child-led clubs, campaigns and awareness raising, that is at the core of the project. Around 24,000 primary school pupils have benefitted from SENSE, while 4,700 school teachers, civil servants and civil society representatives have been involved in awareness raising and capacity building activities.

The project addresses the implementation of the UN Convention on the Rights of the Child and it adheres to the internationally agreed “Three Ones” principles that help guide national HIV and AIDS responses towards more effective coordination, planning and monitoring.

Executive summary:

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I felt these children’s situation myself

“When my best friend told me that he was infected by HIV and that he got the virus from his parents, I was very upset. I wasn’t expecting him to be infected. I was very afraid and we fell out. Then we got together again because I got to know more about how HIV is transmitted.

I apologised to him. He had been very sad because he never thought that I would leave him. He was very happy when we became friends again.

I’ve learned about stigma and discrimination at school and I’m doing drama on HIV and AIDS. I’ve also played the role of being infected by HIV and I felt these children’s situation myself. They used to be stigmatised. We didn’t use to want to play and talk or fight with them because we thought that their breath or scratches would infect us.

Initially, I didn’t think that it was good to change because I didn’t know how it was transmitted. I can’t say that the stigma is totally gone everywhere, even now, but in my school we don’t discriminate because of HIV any longer.”

Negede, 14, class 8

Our lives aren’t like the lives of other children

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The SENSE project in brief

Safe Environment and Non-discrimination in Schools in Ethiopia, nicknamed SENSE, was a

three-year project initiated in 2009.

Developed by Save the Children, the Organization for Social Services for AIDS (OSSA) and the Danish Institute for Human Rights, the project was implemented in cooperation with the Ethiopian Human Rights Commission. SENSE was funded by Danida’s Innovative Pool for HIV and AIDS activities under the Danish Ministry of Foreign Affairs.

With an overall development objective of

“a school environment in Ethiopia free from HIV-related stigma and discrimination” the project also aimed at:

• improving the legal and policy environ- ment to address HIV-related stigma and discrimination at national, regional and local levels;

• reducing HIV-related stigma and discrimina- tion by 2012 via intervention in the schools and communities of Bahir Dar and Debre Markos; and

• enhancing the capacity of relevant stake- holders at national, regional and local lev- els in the promotion of the well-being of children affected by HIV and AIDS.

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The project is the first of its kind in Ethiopia designed to develop built-in systems in schools on how to address HIV-related stigma and discrimination in close cooperation with relevant stakeholders on three levels simultaneously:

• National level: The Ethiopian Human Rights Commission

• Regional level: The Regional HIV/AIDS Prevention and Control Office, HAPCO, and the Regional Education Office in Bahir Dar and Debre Markos

• Local level: Local government offices, civil society organisations, including people living with HIV associations, community members, parents, teachers, support staff and children.

The project goal was to reach 17,000 children but in fact SENSE has benefited around 24,000 primary school pupils. This included children living with or affected by HIV and AIDS from 14 target schools in Bahir Dar and Debre Markos. Almost 4,700 school teachers and support staff, civil society representatives as well as government officials were involved in awareness raising and capacity building activities.

Comprised of a wide range of innovative elements, SENSE:

• Focused on concrete manifestations of stigma and discrimination in various settings in a child’s environment and aimed to establish a monitoring and data gathering system for HIV-related stigma and discrimination as

monitoring stigma and discrimination is one of the least developed aspects of monitoring and evaluation (M&E) frameworks.

• Involved children and youth in the design, implementation and monitoring. Innovative IT and media activities were used in the prevention and awareness raising of HIV- related stigma and discrimination.

• Recognised the need for a comprehensive approach and focused on the relationship between rights holders and duty bearers at the national, regional and local levels.

• Complemented the international endeavours of UNAIDS and others by providing inspira- tion and food for thought within the area of HIV, human rights, stigma and discrimination.

• Developed ideas for policy improvement at national, regional and local levels through analysis and advocacy, such as the Code of

Action and Practice, to prevent HIV-related

stigma and discrimination within the education system.

• Integrated human rights standards for children living with or affected by HIV.

• Was the first-ever NGO project the Ethiopian Human Rights Commission had worked with directly on project implementation.

• Collaborated with the national coordinating agency on HIV and AIDS, HAPCO, which was a central element of the project.

• The project adhered to the internationally agreed “Three Ones” principles on the harmonisation of coordination, strategic planning and monitoring of national HIV and AIDS responses.

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11-year-old Hiwot and her brothers live in a mud hut with sackcloth on the walls and thin, worn out vinyl on the floor.

Their only possessions are a picture of Jesus, two

mattresses on the floor, a rough wooden bench and a broken cardboard box with a handful of clothes. Hiwot explains:

“Our dad passed away five years ago, and one week later mum died as well. My mother used to have a job in a restaurant. I was her replacement when she got too sick to work and I brought her leftover food from the restaurant. When she got confined to bed, the restaurant owner started to hate us and he refused to let me work so I had to beg for food. No one helped us. My aunt did not attend my mother’s burial ceremony. When I tried to collect firewood, the neighbours didn’t let me take anything and they ignored us when we greeted them. I didn’t know the reason and they didn’t explain why. Our lives aren’t like the lives of other children.”

Children orphaned by AIDS are faced with economic hardship, a lack of love, attention and affection, psychological distress, loss of inheritance, increased abuse and vulnerability to HIV infection, malnutrition, illness, stigma, discrimination and isolation. They also are being discriminated against when they want to access basic services such as medical care and education. Children living with or affected by HIV are abused verbally and physically, even by their own relatives, neighbours and friends.

At the same time, stigma, discrimination, gender inequality and the lack of protection of human rights have been identified by all United Nations member states as being among the major obstacles to achieving universal access to HIV prevention, treatment, care and support. This recognition places the promotion and protection of human rights, including addressing stigma and discrimination, as a core component of any effective national HIV response. It should also be a guiding principle for all partnerships and programmatic strategies.

HIV is challenging Ethiopia

HIV and AIDS are major and growing challenges to Ethiopia,

which is already struggling with rapid population growth and almost half of its 80 million inhabitants living in absolute pover- ty. According to official Ethiopian statistics, the estimated adult HIV prevalence for 2009 was 2.3 per cent. However, a teacher in Bahir Dar interviewed in the course of the research for this booklet contested the official statistics as eight teachers out of 36 in his school were living with HIV. Many others had never been tested or they did not disclose their status. One teacher has already passed away due to AIDS. “I personally lost nine siblings to the disease,” the teacher said.

A devastating consequence of the pandemic is the vast number of children left orphaned. According to data from 2007, 16 per cent of Ethiopia’s 5.5 million orphans have lost their parents to AIDS and an unknown number of children are living with HIV themselves. All these children are at risk of various forms of child rights violations, including HIV-related stigma and discrimination.

Stigmatisation is underpinned by the lack of knowledge and misconceptions about how HIV is transmitted, by the incurability of AIDS and by subsequent fears, along with socially sensitive issues such as sexuality, disease and death.

Although openness is essential if governments, communities and individuals are to respond appropriately to the problems, discussions about the causes of HIV and about appropriate responses to the disease are often silenced.

Save the Children’s experiences in implementing HIV projects, as well as studies conducted to measure their impacts, have furthermore shown that HIV-related stigma and discrimination limit the success of projects aimed at preventing HIV and improving the lives of those living with or affected by the disease.

An innovative project

In order to combat HIV-related stigma and discrimination against children who are made vulnerable by HIV and AIDS, Save the Children implemented the innovative project Safe Environment and Non-discrimination in Schools in Ethiopia,

Introduction:

Our lives aren’t like the lives of other children

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nicknamed SENSE, in the Amhara Region in the northern part of Ethiopia. Accounting for 40 per cent of the country’s children orphaned due to AIDS, this region’s estimated HIV prevalence rate is 2.7 per cent.

The project was funded through Danida’s Innovative Pool for HIV and AIDS activities and implemented in 14 schools in partnership with a local NGO, OSSA. SENSE reached approximately 24,000 children in schools as well as teachers, community members, civil society organisations and government officials.

The project was the first of its kind in Ethiopia designed to develop mechanisms and approaches in the education system for reducing, measuring and reporting HIV-related stigma and discrimination with a simultaneous focus on the national, regional and local levels.

The idea behind the project Safe Environment and Non-discrimination in Schools in Ethiopia originated with Save the Children Denmark, the Danish Institute for Human Rights and the Ethiopian Human Rights Commission. It was designed with a number of innovative elements and links between all levels and all stakeholders, thus enhancing the probability of replication, scale up and sustainability.

Being forced to constantly think creatively in order to be a beneficiary of Danida’s Innovative Pool for HIV and AIDS activities has been one of the real strengths of the project, explains Steven L. B. Jensen, HIV/AIDS Programme Manager, the Danish Institute for Human Rights. Very little existing documentation could be identified, so the project design had to be worked out from scratch and new approaches had to be invented.

SENSE, with its intricate design, advanced human rights approach and various field-based activities used to develop best practices and feed into a Code of Action and Practice has forged links between national, regional and local levels and opened doors in many places.

Combined expertise

From the very onset of the project the Danish Institute for Human Rights approached the Ethiopian Human Rights Commission to establish a cooperation. The Danish Institute for Human Rights works internationally through a partnership approach with national human rights infrastructure that includes national human rights Institutions, ministries and civil society. Newly established and in want of professional partners, the Ethiopian Human Rights Commission immediately seized on the idea.

As the Danish Institute for Human Rights is an independent public institution, its role was defined as that of a consultant, while Save the Children as a strong NGO was to be responsible for overall coordination and implementation.

With a Save the Children office in the capital of Addis Ababa and OSSA identified by Save the Children as a competent implementing partner, the foundation for SENSE was ready.

In the course of the project these organisations worked side by side, drawing on their combined expertise.

Having the Ethiopian Human Rights Commission on board as a national partner ensured that the advocacy and systematic capacity building of local partners and stakeholders yielded good results and provided an opportunity to improve the link between human rights, HIV and education.

A main stakeholder, the HIV/AIDS Prevention and Control Office, HAPCO, only started working with children as a specific target group when SENSE commenced.

Strategic information compilation

In early 2009, the SENSE project proposal was finalised and the project took off. A baseline study was carried out by Save the Children, while the Danish Institute for Human Rights took charge of a legal and policy framework analysis in 2010.

A stakeholder analysis was also developed.

These studies represented the major strategic information compilation and analysis that helped inform and guide the remainder of the project implementation and the development of educational materials. The studies also served as the basis for a series of stakeholder consultations that helped mobilise awareness and interest in the SENSE project.

In addition, they supported the identification of gaps, training and capacity building needs and the definition of institutional roles and responsibilities.

Moreover, these studies represented the first real attempt to compile information based on concrete manifestations of HIV-related stigma and discrimination against children living with or affected by HIV in Ethiopia and were not merely

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based on anecdotal evidence. Information of this nature was not available in Ethiopia at that time and it barely existed in other African countries or elsewhere. Thus, the baseline study and legal and policy framework analysis generated much attention in Ethiopia as well as internationally.

Building on national ownership

The SENSE project was built on national ownership and supported the strengthening of HAPCO, a national strategy and monitoring and evaluation framework, all of which were found to have weak approaches for addressing stigma and consequently aided in promoting a vicious circle in which stigma was not being reported at local levels. As a result, the issue only rarely reached regional and national policy makers, who thus did not work to change the national frameworks to accommodate HIV-related stigma and discrimination in official reporting systems.

While aiming at introducing indicators on HIV-related stigma and discrimination into the official Ethiopian monitoring and evaluation formats, Save the Children and the Danish Institute for Human Rights had to acknowledge that this goal was too ambitious. Other initial ideas were also modified, e.g. the hope of having close cooperation with regional level government offices was scaled down and the local level government cooperation was given even more emphasis as it became clear how highly decentralised Ethiopia is.

For example, initially SENSE intended to work closely with the Ministry of Education. However, according to national regulations, ministries are only to be involved if the project operates in more than two regions. As SENSE only operated in one region, the Ministry of Education was only consulted and updated on some issues related to the project, such as the baseline survey, the legal and policy framework analysis, the stakeholder analysis and the Code of Action and Practice.

This is just one example of how SENSE systematically

adjusted the project design in keeping with the experiences gathered from the field and based on the amount of cooperation provided by governmental partners at all levels.

On a very practical level the children and their teachers have been extremely active in the entire process, which is mirrored in this booklet.

Stigma is changing its appearance

SENSE continually took into consideration the fact that behavioural change takes time and that context matters.

While celebrating many victories in the process of challenging HIV-related stigma and discrimination towards children living with or affected by HIV, different stakeholders found that while stigma and discrimination apparently have been reduced, the manifestations of stigma have also gradually tended to change in appearance.

Abeke Birile is involved in a local community initiative against stigma in Bahir Dar. He elaborates, “Some people disclose the results of their HIV tests. Some are still silent. They are apprehensive due to the fear of stigma. Maybe parents don’t allow their children to tell anyone about their status. It depends on the place and the level of education. People in Debre Markos, for example, come from the rural areas. It’s a small place and everyone knows each other and the local gossip.

Many are illiterate. They are more silent because there is more stigma. Bahir Dar is a larger city and most people are somewhat educated. We have many colleges and universities and the level of knowledge is higher. This all helps reduce stigma.”

Even in Bahir Dar HIV-related stigma is still a barrier to some, although in a more subtle way, says Gebirasselassie Gebiremariam. “I work as a branch manager with the national tour organisation and to be honest – I don’t know if I would hire a person who was infected with HIV. We have a business oriented strategy and we want to attract tourists. We mainly hire beautiful young girls and we wouldn’t want them to work with customers if they are infected. But maybe if the focus on stigma continues, then there may be changes in the future – also in my organisation.”

One of the goals of SENSE was to work for future changes like this as well. “By documenting and sharing processes, approaches and the good practices developed by the project and by showing how these have brought about changes in the lives of vulnerable children, our wish is to inspire, motivate and enable other professionals to continue the battle against HIV-related stigma and discrimination,” says Sita Michael Bormann, Thematic Coordinator, HIV & Health, Save the Children Denmark.

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Ethiopia’s lowest local level administrative unit is the Kebele. It has a representative council called the Kebele Council and an executive body, the Kebele Administrative Council.

The next level is the Woreda. They are estab- lished by all regional states and cover a geographi- cal area in which approximately 100,000 or more people reside. The Woreda also has a representa- tive council comprised of elected

officials called the Woreda Council, which acts as the executive organ of the Woreda administration.

The top-tier Zone administration is not an autonomous institution, but rather a branch of the regional governments. The most important function of the Zone is liaising between the Woredas and the regional administration. It also coordinates the work of the Woredas and provides them with technical assistance.

Facts about Ethiopia’s three-tiered local government administration

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A pioneer organisation working on HIV/AIDS, the Organization for Social Services for AIDS (OSSA) is a national Ethiopian NGO established in 1990 by religious organisations, international agencies and the Ministry of Health.

OSSA, which has 19 branch offices, works with the community, government offices and interna- tional and bi-lateral organisations. There is a branch office in both Bahir Dar and Debre

Markos. OSSA was the first organisation to intro- duce anti-AIDS clubs and awareness raising in Ethiopian schools to prevent HIV transmission among the youth.

Moreover, OSSA was the first organisation in Ethiopia to assist people living with HIV to become organised and claim their rights in a systematic manner.

Introduction to OSSA

It’s 9:30 in the morning. The little white cloth at the top of a one meter pole on the side of a mud road indicates that homebrewed beer is available at the adjacent house. Inside the living room men and women are already gathered for a sip. The mother of 13-year-old Yosef and his five siblings is the manager of a small private inn, which along with the pension of Yosef’s father, keeps the whole family, including his grandparents, alive.

Yosef’s father is only 50 years old and used to be a soldier, but living with HIV he had to retire early. “Six years ago when I learned that I was infected by the virus, I didn’t tell anyone. Today, I work against stigma by giving testimonies at health centres, hospitals and in communities. As I’m not thin, they cannot believe that I’m infected.

According to general belief, a thin person is infected with HIV,” explains Yosef’s father.

He says that so many people have passed away due to a lack of awareness and treatment. Many still don’t know how to protect themselves.

“When they suspect that they are infected, they don’t dare to get tested. Or they spend money and time travelling to other towns to get the test and treatment so that no one will know in their own community. SENSE and the increased focus

on stigma have made it possible for me to give testimonies. But I still don’t take my medication in front of the people who drink in our inn. I’m not sure they would continue buying beer here if they knew. So we have to continue the awareness raising. Then the attitude will change totally.”

Yosef is also a bit cautious. “I didn’t tell my friends at school that my dad is infected, because my school is not yet 100 per cent stigma free. But I tell others about how the disease transmits, and that they don’t have to fear those who are infected.

When everyone has been advised and the last five per cent of stigma goes, I will tell everyone.”

Without SENSE I wouldn’t have disclosed my status

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Stigma has been described as a process of devaluation whereby an individual, in the eyes of others, is significantly discredited. HIV- related stigma and discrimination is multi- layered and builds upon and reinforces negative connotations, e.g. through the association of HIV and AIDS with marginalised behaviours. It may affect both those living with or suspected of living with and those affected by HIV and AIDS by association, such as orphans or the children and families of people living with HIV and AIDS.

Discrimination has been defined as “any distinction, exclusion, restriction or preference which is based on certain prohibition criteria, and has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by certain persons, on an equal footing, of certain rights and freedoms.”

The relationship between stigma and discrimination has been described as follows:

“Discrimination involves treating someone in a different and unjust, unfair or prejudicial manner, often on the basis of their belonging, or being perceived to belong, to a particular group. It is often viewed as the end result of the process of stigmatisation.” In other words, when stigma is acted upon the result is discrimination. HIV- related discrimination occurs when someone is

treated differently (and to their disadvantage) because they are known to be living with HIV, suspected of living with HIV, or closely associated with people living with HIV and AIDS.

Discrimination takes on a variety of forms:

1. Direct

2. Indirect (institutional) 3. Harassment

4. Instruction to discrimination 5. Multiple discrimination

Ensuring equal treatment and opportunities is a core objective of the work towards non- discrimination. The principle of equal treatment means individuals in similar situations get treated equally but not necessarily the same. Sometimes special considerations must be taken towards people with specific conditions or vulnerabilities, e.g. school-age children who may be orphans or who are living with or affected by HIV and AIDS.

Adapted from Safe Environment and Non-discrimination in Schools in Ethiopia (SENSE) project document

Definitions of stigma and discrimination

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All human rights instruments prohibit discrimination, distinction, exclusion, restriction or preference in the provision, protection and promotion of rights – as a right on its own as well as in regards to all other rights. One of the four general principles in the UN Convention on the Rights of the Child is non-discrimination, a principle that transcends all human rights instruments:

1. States Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child’s or his or her parent’s or legal guardian’s race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.

2. States Parties shall take all appropriate measures to ensure that the child is protected against all forms of discrimination or punishment on the basis of the status, activities, expressed opinions, or beliefs of the child’s parents, legal guardians, or family members.

Human rights and HIV

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Dissemination of findings from review and situation analysis at all levels

Review of national level legal framework, policies and enforcement practices

Development of plans based on findings from review and situation analysis. Including:

• How to address identified gaps

• Recommendations for policy revision

• Needs for capacity building

• Identification of advocacy targets, issues and steps

• Definition of roles and responsibilities

Develop system for monitoring and reporting HIV-related stigma and discrimination from local to regional and national levels Baseline study on HIV-related stigma and

discrimination at local level

The SENSE project flow

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Integrating handling of HIV-related issues into the national level Ethiopian Human Rights Commission.

Including:

• How to address stigma and discrimination

• Documentation and reporting mechanism

Training of the Ethiopian Human Rights

Commission on HIV- related stigma and discrimination

Training of education experts and officials at regional and local levels on HIV-related stigma and discrimination in the education system

Develop anti-stigma and discrimination guidelines along with teaching materials for local level education offices and schools

Training of teachers and com- munity representatives in anti- stigma and discrimination

Local level awareness raising on stigma and discrimination against children living with or affected by HIV and AIDS

Care and support to children affected or infected by HIV

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Fewer dropouts and better

academic performance in schools

• The SENSE project was carried out in the regional capital of Bahir Dar, population approximately 180,000, in the northwest part of the Amhara Region and in the smaller town of Debre Markos, population approximately 62,500, which is a couple of hundred kilometres southeast of Bahir Dar.

• The hardest hit of the regions where Save the Children Denmark is working, the Amhara Region is the third most HIV-affected region in Ethiopia.

• The authorities in the Amhara Region have found that stigma and discrimination are serious challenges, especially for children living with or affected by HIV and AIDS.

• The SENSE project is based on volunteer work, especially by teachers, support staff and school directors. Only the focal persons of Child Protection Committees receive a small monthly travel allowance.

• SENSE includes five local government

signatories: the Education Office; the HIV/AIDS Prevention and Control Coordination Office (HAPCO); the Women, Youth and Children’s Office; the Health Office; and the Finance and Economic Development Office.

• The child participants are primary school pupils 7-14 years of age.

Facts about the SENSE project at local level

In the window of a tin shed a large loudspeaker is blaring the voice of a male child journalist towards hundreds of children gathered on a large open, grassy space in front of their school,

“You should not stigmatise those who are living with HIV.”

Some ten minutes later two girls yell at each other, and one girl breaks down crying when she is accused of being contagious. The act takes place on a small manmade plateau of soil next to the tin shed. In the background the town of Debre Markos is visible on its natural hilltop behind the children in the audience.

After many arguments the girls are reconciled and the performance closes with a vibrating Ethiopian song and four dancing girls.

The child journalist and the performers all go to the same school in Debre Markos. Like thousands of other pupils in five schools in Debre Markos and nine schools in Bahir Dar in Ethiopia’s Amhara Region, they are members of a Mini Media Club, which is at the core of the school-based SENSE project designed to combat stigma and discrimination towards children living with or affected by HIV and AIDS.

Photo: Lotte Ladegaard Photo: Lotte Ladegaard

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The SENSE project was developed based on availa- ble secondary information. To establish concrete data on the knowledge, attitudes and practices of the different stakeholders on HIV-related stigma and discrimination in Debre Markos and Bahir Dar, a baseline study was carried out in 2010. The base- line information made it possible to compare the situation before and after the project intervention.

The overall objective of the baseline study was to gain a comprehensive understanding of the level and manifestations of different forms of HIV-related stigma and discrimination as well as of the existing knowledge, attitudes and practices on HIV-related stigma and discrimination in the intervention areas.

A cross-sectional study using both qualitative and quantitative methods was carried out.

Structured interviews were conducted with people living with HIV and community members.

Focus group discussions and in-depth interviews were also undertaken with selected informants.

Both qualitative and quantitative data were analysed and presented using standard analysis and presentation techniques with the following purposes:

• To develop a monitoring and evaluation framework for measuring stigma and discrimination.

• To identify issues that needed to be adjusted in the project.

• To assist the Ethiopian Human Rights Commission in addressing HIV-related stigma and discrimination.

• To design a Code of Action and Practice for teach- ers, school support staff and children.

• To publish and distribute various education materials, information, communication, and messages in and out of schools in intervention areas.

• To identify advocacy issues, targets and messages.

• To link with national HIV frameworks and processes like the national HIV umbrella organisation NEP+, HAPCO and UN processes, as well as the People Living with HIV Stigma Index:

Ethiopian Stigma and Discrimination Survey Report,

which was written in an on-going partnership between two networks of people living with HIV, UNAIDS and the International Planned Parenthood Federation.

The baseline study, which took its point of departure in background information such as gender, marital status, education and employment, income level and number of children, determined how long the interviewees had lived with HIV, if they were still sexually active, if they had been tested, and if they had disclosed their results.

The foundation for SENSE: Baseline study – 2010

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The external stigma and discrimination due to HIV status in the form of e.g. exclusion from so- cial, religious and family gatherings; being gossiped about; verbal and physical harassment and assaults;

and sexual rejection were also studied.

The interviewees were asked whether they had been forced to change housing or jobs due to their HIV status, dismissed or prevented from taking advantage of education opportunities or denied access to health care.

Another issue that was examined was internal stigma, such as the feelings and fears experienced when diagnosed with HIV, e.g. shame, guilt, blaming self or others, low self-esteem, isolation, self-isolation, the avoidance of social gatherings, the fear of denial of marriage or sex and the dread of being gossiped about and harassed.

People were also questioned about their general HIV knowledge, transmission routes, how to avoid HIV, their perception of people living with HIV and if they had witnessed stigma and discrimination towards people living with HIV and AIDS.

This included concrete examples of stigma and discrimination at home, in schools, in the community, at health facilities and in workplaces.

The HIV and orphan situation in the areas was studied in general and in relation to stigma and discrimination and the disclosure of HIV status and in relation to talking to children about HIV status.

The quantitative component of the study indicat- ed a significant level of stigma and discrimination,

while the qualitative section indicated that there are several instances of severe forms of stigma and discrimination in the project areas. Misconceptions about HIV and AIDS and people living with HIV, along with gossip, backbiting, bullying and shame were the major issues that needed attention.

One of the findings of the baseline study was that most of the school children living with or affected by HIV and AIDS did not know why their parents died and they did not know if they were living with HIV because their parents passed away without disclosing their own HIV status and that of their children. Focus group discussions clearly revealed that disclosing the HIV status of family members to children in the family is not a common practice and subsequently leaves the children uninformed about a vital aspect of their lives.

Simultaneously with conducting the baseline survey at the local level, a legal and policy framework analysis was conducted at the national level to review various policies, strategies and legal documents in Ethiopia to see if and how they addressed stigma and discrimination in relation to children affected by HIV and AIDS.

These two analytical studies provided important strategic information that has guided the imple- mentation of SENSE and helped mobilise stronger partnerships around the project aims. They have also fed into advocacy initiatives related to children, HIV and AIDS, stigma and discrimination.

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Members of the Mini Media Clubs regularly stage radio broadcasts, narrations, poems, songs and dramas. The per- forming school’s Mini Media Club has 98 female and 37 male members, all of whom are volunteers and contribute according to personal interests. “We have divided ourselves into smaller groups. Some dance. Some do drama. Some do radio broadcasts,” explain Mini Media Club representatives.

We want to get rid of false beliefs

“We produce the script, practice and select the appropriate voices and characters during the weekends and before the first morning class. We radio broadcast when the other students arrive for classes, during the noon break and again at the end of the day. We also present music and songs. We do all this to get rid of false beliefs. Many people still think that HIV is transmitted through mosquito bites or by breathing, but we know that almost all those living with HIV are infected by sexual intercourse or during birth from mother to child,”

the children elaborate.

Every now and then the schools hold competitions where the most powerful script, poem and play receive awards to encourage the children to engage even more. A manual on child journalism has been developed by a media agency in Addis Ababa and child representatives have been trained in reporting and media. Child-friendly information materials on HIV and stigma were developed and all schools were provided with amplifiers and loudspeakers for the Mini Media Club broadcasts.

Just as the children participate according to their interests and talent so do the teachers. “I always wanted to be a journalist. I am practicing with the children. Their voices should be like music,” says a teacher volunteering with the Mini Media Club.

Narratives and poems

While the radio broadcasts take place daily, some schools set a weekly day for poems and narratives at flag ceremonies in the morning. Others just improvise when a child comes up with an idea. Dramas are staged every now and then and especially at parent meetings, community events and on holidays.

Stigma and discrimination against children living with or affected by HIV are the main topics, but the children also cover other important issues, e.g. how to avoid and heal tuberculosis and other infections, which are often closely linked to HIV and AIDS. “We usually select sensitive issues that we think other children should know about,” explain Mini Media members in Debre Markos.

15-year-old Tirualem, a script writer in her Mini Media

Club, explains that if a message is touching and really addresses the essence, you might receive an award. “My group got two awards for our plays. I wrote the scripts with two characters, the stigmatised and the stigmatiser, and it took place in the community. Initially, in the play, one family would not allow their children to talk to the other family’s children. I took the situation from my own community.

Although the stigma is being reduced nowadays, I still observe these situations,” says Tirualem.

Tirualem stopped being afraid of contracting HIV long ago because of her knowledge, although she is still troubled by the disease, “If one of my friends becomes infected I become afraid for a moment, because it’s heartbreaking to hear. I know you can’t cure it and I know that I will lose her at some point.”

Lots of child participation

Performances carried out by Mini Media Clubs are thoroughly evaluated by teachers and children. Differing from school to school, the level of child participation is generally high in all processes; although some schools let the teachers select the topics on an annual basis and evaluate all performances and broadcasts. In other schools the children are in charge of almost all processes.

Many people in conservative communities where children traditionally are not to be heard resist child participation.

However, the involvement of children appears to have gradually increased as the teachers slowly experience children’s full engagement, leading to improved, more widespread and sustained behavioural change among the children, their parents and in the communities.

Knowledge and awareness

A major part of SENSE is to increase skills that help all children in the participating schools become more accommodat- ing by raising HIV awareness and by creating access to further information. Groups of children were taught IT skills so they could search the internet for HIV and AIDS-related topics for further knowledge. Peer and facilitation training help selected students carry forward knowledge from trainings to more children.

“The peer education programme started with a series of life skills training involving e.g. communication, conflict resolution, how to bring about change, overcoming challenges and decision making. Standard manuals were developed by Save the Children’s partner organisation OSSA and consultants for all training,” recalls a group of teachers in Debre Markos.

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Thanks to the newly gained life skills the children have become better at solving problems, positive communication and group integration. The most vulnerable children are being encouraged to become assertive and cooperate with other children. The life skills manual was developed by an external consultant with the point of departure in the baseline findings. The consultant provided the initial training of trainers, who afterwards spread the knowledge to more children.

“Five years ago I quarrelled with a friend. After the conflict resolution session we came together and spoke about what happened. My friend is living with HIV and I had badmouthed her. I realised that I was the culprit and I apologised,” explains one girl during a life skills training session.

The same girl travelled with her mother to a rural area to visit relatives. “A woman refused to provide another woman with a glass of water. I asked why and she told me that the other woman was infected with HIV, so she would need to drink from her own glass, which would have to be washed especially carefully. I tried to convince her that HIV does not transmit like that, but she boiled water and washed the glass with special disinfectant leaves anyway.”

A boy keeps telling his mother about how HIV is transmitted and that he must be allowed to play with a neighbourhood friend living with HIV. “Now my mum is no longer so afraid,” he explains.

Teachers playing a pivotal role

School teachers, support staff and school directors play a pivotal role in SENSE. “I heard about stigma even before SENSE through the mass media, yet I didn’t fully understand HIV and how it transmits. I used to feel somewhat apprehensive when I was together with a child living with HIV. At that time I didn’t know that the risk of transmission is reduced if a child is in reg- ular antiretroviral therapy,” says one teacher in Debre Markos.

He explains that stigma is all about fear, but when you participate in training, engage in free discussions and increase your awareness, your attitude changes over time. “Although stigma has not been fully eradicated, the project has brought many changes,” he says.

“We used to base our stigma on gossip. This is a small society, so we know how children lose their parents to disease and we know whose mothers work in the sex industry.

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Normally, we would suspect a child from such a family of being HIV positive. But we have learned that we cannot know without a proper medical examination,” adds another teacher.

When a group of teachers and support staff in Debre Markos recalls how it all started, it appears to have been a very stepwise process. “Initially the schools with the most vulnerable children were identified by the Education Office.

Within these schools, children living with or affected by HIV were identified by us and by the other children. Orientation on SENSE was provided for 15 teachers per school. We also received guidance on how to work with stigma and discrimination and two teachers in every school were taught counselling skills.”

Direct support to some children

Only 20 children in each school could receive direct care and support services due to limited project funding. The services were provided as a comprehensive package that included psychosocial, medical, nutritional and tutorial support as well as educational materials and clothes. These children were all either living with or affected by HIV and AIDS. “It was very hard to identify these children as lots of children are living

under extreme hardship in Ethiopia and many were eager to get their share of the support,” explains one teacher.

At the same time, not all children living with or affected by HIV and AIDS were aware of their own HIV status or that of their parents, because parents often do not inform their children about it to protect them from stigma, as the baseline study found.

The teachers solved the problem by engaging all the students in the selection process. Living side by side in their neighbourhoods, classmates usually know very well what their friends’ living conditions are really like.

By providing these extremely vulnerable children with new clothes and school uniforms, detergent and soap they can go to school neat and clean like any other child. This helps reduce bullying and isolation. Many vulnerable children also have difficulties paying for textbooks and pens, so these are also distributed. Lack of proper food and a high level of child labour to earn an income for the next meal make vulnerable children tired and unfocussed, so a local grain called tef, wheat flour, oil and salt are provided to prevent children from dropping out and to improve school performance.

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Additional treatment and support

Although HIV treatment is free in Ethiopia, Ethiopians living with HIV have to pay for the cure of opportunistic infections when they visit public hospitals or health centres. The prevention and treatment of these infections, however, are crucial.

Sometimes opportunistic infections have to be treated before HIV treatment can be initiated. They can also be revealed after starting HIV treatment as the immune system starts to recover. Prevention and treatment of opportunistic infections are vital if antiretroviral therapy stops working because of poor adherence, drug resistance or lack of proper food. The children living with or affected by HIV and AIDS identified by SENSE are consequently linked to local health centres that can refer the children to the relevant free treatment.

In many schools, the children living with or affected by HIV are also engaged in school-based urban gardening. Although many of these gardens are established with support from other projects, the children receiving care and support from SENSE are also participating in order to get used to growing their own healthy food, which is essential if antiretroviral therapy is to work well. The children may also earn a little income by selling some of the crops.

Some students have established Humanitarian Clubs to mobilise extra money for their more vulnerable classmates by selling leaves for firewood, gelatine, chewing gum and candy.

The money is used to buy extra school uniforms and provide other sorts of support for children living with or affected by HIV. The students themselves also contribute small amounts of money.

Psychosocial support too

The children living with or affected by HIV and AIDS also receive psychosocial support. In addition to training interested teachers to become counsellors, the project has helped establish groups and rooms for counselling at all schools.

Tamirat Kassahun is a teacher who works as a volunteer counsellor with SENSE in Debre Markos. He says, “This is actually a real opportunity for me as I’ve studied psychology.

One of ‘my’ children is a 14-year-old girl, who lost both of her parents. She is obviously upset and although she is a very good student, she has become frightened of exams. She lives with her uncle and she has to help do the household work. I tell her to focus on her education, because she has to work hard if she is to compensate for being all alone. We speak

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about making a plan for her studies, so that she can do her homework at night. She’s also concerned about not having a boyfriend and she wants to know if that’s normal.”

In Tamirat Kassahun’s school 258 out of 1,100 pupils are orphans and more than 32 children are living with HIV. His job as a counsellor is not always easy. “Some children told me that the boys took a girl living with HIV to the recreational area for sex and I know that some girls have illegal abortions.

I always recommend these girls to have an HIV test and to abstain from sex. We tried to distribute condoms, but then the missionaries protested, and the police too, because some of the girls are below the age of consent, which is 15, so we had to stop,” he says.

Committees protect vulnerable children To improve the social protection of the vulnerable children, Child Protection Committees have been established at all the schools. Each Child Protection Committee appoints a focal person, who is the direct link if a child wants to share a problem or complain about harassment.

Most committees have five members, but this varies from

school to school. Some only include teachers, support staff and a school director, while others comprise community representatives, parent association members and children. As put by one focal person in Bahir Dar, “Teachers alone cannot do everything. The parents represent the community. The children know about other children. The parents and children live in the communities and they can mobilise their own neighbourhoods.”

The wall of the counselling room where the Child Protection Committee meets is covered with graphs, quotations and posters on stigma and discrimination. The committees maintain confidential, handwritten paper files containing data on the 20 identified orphaned and vulnerable children in their school.

These files include the children’s life stories and own writing on how they see their future, qualitative descriptions of processes, trainings, events and achievements and improve- ments in each child’s performance, excerpts from counselling sessions, statistics, lists of the food and clothes distributed, health care and medical aid provided via linkages to health authorities, all scripts, narratives and poems produced with

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the Mini Media Club, meeting minutes and other details that enable the teachers to monitor the children’s progress and the outcome and impact of SENSE. The information also helps them prepare quarterly reports to the authorities and OSSA.

Experience sharing helps the teachers from the different schools and the authorities solve common problems together.

“Ultimately, it may help us find support from other sources and donors,” explains a member of a Child Protection Committee.

One committee member, five children

“We also initiated competitions with questions dealing with HIV and AIDS and this helped decrease stigma, enhanced cooperation and led to better poems and scripts among the students. Then we divided the vulnerable students between us so that each member of the committee is responsible for five children. This gives the children a fixed person to rely on and talk to,” explains a member of a Child Protection Committee in Bahir Dar.

This committee also has a child member who is responsible for five children as well. He is only in year four, but he does not find the responsibility too overwhelming. “We have common formats for all our activities, so I know exactly what to do and I have a very good relationship with all the children.

If a problem is too big, I just present it to the committee.”

“There are children, who would like to be members, but where we decided to say no, because it requires some maturity and a certain age to be responsible for other children,” adds the director. “This boy was heading a Child Protection Club, and the other children believed that he could perform the task.”

Home visits are also on the committees’ agendas so they can check if all the materials distributed to the children living with or affected by HIV are being used accordingly and not sold or stolen. These meetings with parents and guardians are minutely described and filed, so that anyone can refer to previous problems and their solutions if necessary.

“Some families sold the materials to get cash, but then I spoke to the parents and guardians to make them understand that their children need to eat the food. I also counsel families to remain in the same area to maintain the support instead of moving to other towns. I also help resolve conflicts, especially on how much you can expect a child to work. I also check if the family receives similar support from another project to avoid duplication,” says a member of the Child Protection Committee in Bahir Dar.

Committees are popular with teachers Each Child Protection Committee has selected a focal person, who is in charge of coordination and who is always available to any child who would like to complain about stigma and discrimination. Although all the members of these Child Protection Committees and especially the focal person work long hours as volunteers in addition to their full time jobs, it has been necessary to elect or select people from among the large numbers of teachers, community members and children who want to become members.

While some schools carry out elections, others select according to criteria such as motherly behaviour, humanity and the capacity to show love.

“As a teacher I know these children’s problems and I don’t want them to drop out. We’re all human and, yes, we’ve also been stigmatising these children due to a lack of knowledge, but now we don’t stigmatise any longer. Instead, we discuss how to care for those who are sick,” says a member of the Child Protection Committee.

The teachers underline that they like the project, because they can influence the process and they are happy that they finally got an opportunity to provide some comfort to those children who otherwise would remain outcasts.

Stigmatised children can complain In order to prevent stigma and discrimination towards children living with or affected by HIV, the schools have established complaint mechanisms. Any child who feels discriminated against or who has observed episodes of stigma can complain directly to their contact person in the Child Protection Committee, to the focal person or via suggestion or complaint boxes set up in central places in each of the 14 schools. The counsellors are responsible for opening the complaint boxes, taking the complaints to the school council and for providing advice on how to solve the problems. The school director is often the person to have a serious talk with the children who have instigated the discrimination.

And it works. One girl in Bahir Dar recalls how she finished writing her assignment early in school one day. This apparently annoyed her classmates and one boy shouted “you’re sick.”

The girl cried and went to the focal person to complain. When the classmate found out, he pursued the girl even more viciously, but the focal person became very angry and threatened to hand the bullying classmate over to the police.

“The focal person did a lot of counselling and the boy was told to apologise to me. He promised not to torment me again,” recalls the girl. Before the SENSE project she used to

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go to the director. “But it’s much simpler to talk to the focal person, because the director is too busy, and because the focal person accepts me and knows my problems and is good at finding solutions,” explains the girl.

Children counsel children

In some schools, children have initiated tutoring for their academically weaker classmates and a group of children in Bahir Dar decided to provide counselling to their peers, because “children are friends with each other and they can talk about everything. If we can’t solve a problem, we refer the children to the focal person.”

A girl recalls a situation from her own school. “One girl was being bullied. She was HIV positive and her siblings also got the virus. They lost both of their parents and everyone knew about it. They knew that the children were in antiretroviral therapy. They weren’t allowed to rent a house and the other children avoided them. They were isolated and they weren’t allowed to work. The girl did not go to school regularly. She told me about it. We decided to conduct a coffee ceremony where she told everyone what happened and how it felt. Then, the harassment stopped.”

Coffee ceremonies are an integral part of Ethiopian culture and are used both privately when a family wants to pay its respects to someone visiting and at social gatherings and community meetings.

These children also established their own peer parliament with a peer president, a peer prime minister and a number of peer ministers for different subject areas. They are elected by the other students and they each have their own responsibilities. The peer minister for women, youth and children is responsible for the facilitation of all child clubs in the school.

The peer minister of economic development is in the process of setting up a new savings scheme. He is close friends with the peer minister of agriculture and they are working together to make the children involved in urban gardening save some of their money for emergencies.

The peer minister of communication is of course in charge of the Mini Media Club.

Generating income for the future

The Child Protection Committees are also in charge of income-generating activities as a means of making the methods sustainable. Amongst these activities are HIV and AIDS funds and small businesses such as shops, gardening, sheep fattening, cafeterias and teashops. Save the Children has provided a small grant to establish them.

At the same time, the teachers and support staff are engaged in spreading the knowledge from SENSE to parents and guardians, influential persons and public officials in the local communities, religious persons and local civil society organisations.

“You know, teachers are community members too and we teach in every corner – also outside school. And when we conduct a lesson in the classroom our students share their knowledge at home. We regard spreading knowledge about HIV and stigma as our civic duty. We must teach the background, how HIV is transmitted and how treatment works. Then we have a good relationship with the children and with their parents. This also leads to more openness about the issues,” explains a teacher in Debre Markos.

Strong local government involvement Local government officials are highly involved too. Five local signatories – the Education Office; the HIV/AIDS Prevention and Control Coordination Office (HAPCO); the Women, Youth and Children’s Office; the Health Office; and the Finance and Economic Development Office – have specific project responsibilities as stated in the Memorandum of Understanding, which they have all signed. Having agreed on the way forward, their roles and responsibilities are clear. They are all mandated to follow and monitor the project closely, help coordinate, execute and assess activities, and provide feedback and supervise from their own perspective. The close contact between the focal persons and the five signatories has ensured continued and local ownership.

All local signatories have participated in extensive capacity building as a part of the SENSE project. The main part of the capacity building and training is conducted by local government experts and people living with HIV.

This approach was chosen to involve and strengthen as