Stigma, according to the UNAIDS definition, is a powerful tool of social control that can be used to marginalize, exclude and exercise power over individuals who show certain characteristics. Stigma and discrimination in the context of HIV/AIDS can be traced back to the moment that HIV/AIDS was first described and the subsequent identification of `high-risk groups’ as being the majority of individuals initially infected by HIV. Although there are examples of individuals, families and communities that have risen beyond stigma and discrimination to show acts of compassion, care and support to those who are affected and infected, individuals and communities continue to stigmatize and discriminate against individuals living with HIV/AIDS.

Religious leaders have a unique catalytic role to play in addressing stigma and discrimination within communities. Religious leaders can influence a community’s response. Unfortunately, many religious leaders have spoken in judgment against HIV/AIDS equating it to sin that afflicts un-believers and those who have fallen short in their morals. Ironically, religion is full of hope for those who suffer and this can be translated into action to support those infected and affected by HIV/AIDS.

The ICASA Satellite Session on `The Role of Religious Leaders in Reducing Stigma and Discrimination Related to HIV/AIDS’ offered a unique opportunity for religious leaders to deliberate on their response to HIV/AIDS and to offer suggestions for deeper religious engagement in eradicating stigma. Organized by the World Conference of Religions for Peace and the CORE Initiative, with support from USAID, the session brought together religious leaders, people living with HIV/AIDS and other participants working in the area of HIV/AIDS to focus on developing suggestions for the way forward in addressing stigma and discrimination.

The session was designed to be a round table discussion, with panelists responding to questions raised by the moderator and each other. Mr. Stephen Lewis, the United Nations Special Envoy for HIV/AIDS in Africa, served as the moderator, with the following persons on the panel:

Rev. Japé Heath, Anglican Priest and Coordinator of African Network of Religious Leaders Living with or Personally Affected by HIV/AIDS (ANRELA), South Africa
Bishop. Otsile Ditsheko, Chairman, Southern Africa Region, Organization of African Instituted Churches, Botswana
Sheikh Al Hajj Yussuf Murigu, Vice Chair – The Supreme Council of Kenya Muslims (SUPKEM), Kenya
Dr. Musa Dube, Consulting Theologian, WCC- Ecumenical HIV/AIDS Initiative in Africa, Botswana
Fr. Peter Lwaminda, Secretary General – Symposium of the Episcopal Conferences of Africa & Madagascar (SECAM), Ghana

The session was organized around various themes and questions that served to guide the discussion among the panelists. Members of the audience also were able to raise questions and comments at the end of the panel discussion.

This report presents a summary of the panel discussion and the main recommendations offered by the panel. It has been organized under the thematic areas that guided the discussion. A list of the themes and subquestions is attached to this report as Annex 1.

II: The Reality of stigma and discrimination

Stigma and discrimination has often been fueled by the tendency in religious communities to equate HIV/AIDS with sin. As well, stigma and discrimination within religious organizations can be perpetuated through the lack of a structure and policy to deal with people who are HIV+. This has led to individual clergy refusing to be tested for HIV for fear of being found positive and those who have tested HIV+ refusing to speak of their status for fear of a negative response from the church. “Parishes do not accept a priest living with HIV,” said Rev. Japé Heath of South Africa. This environment creates a great deal of self-stigma for those infected, as they fear the response from others both in their personal and professional lives.

Rev. Heath spoke of his problems since he came out regarding his status. While his own parish has been supportive, it is unlikely that he could find another parish in which he could serve as a consequence of being HIV+. As he stated, “the Bishop has allowed me to live and work openly with HIV but he can not be able to find another parish that will accept me”.

Fear of confirming status has also led clergy who may be HIV+ not to access care and support services even though these might be available. Clergy prefer to remain silent about their status and die in fear of it ever being found out. Rev. Heath told a story about a young priest who feared testing because if he were found to be HIV+ he would not be ordained. He went for testing and the result came back positive. After counseling he went on treatment. He was doing well on treatment, however during this time his family discovered his status. The reaction from his family caused him to deteriorate and he died shortly after.

Issues around family notification are a real dilemma confronting clergy in their work with HIV/AIDS. Due to the need to confront and control the spread of the HIV epidemic, they are often advised to speak out during funerals and state openly that HIV/AIDS was the cause of death. However, they need to consider carefully the implications of such an announcement to the survivors of the dead individual. It may mean that because of their announcement the family of the dead individual would be stigmatized and ostracized by the community in which they live. Such an announcement has often led to isolation and finger pointing in past. “There is too much silence around the issue. Stigma has to do with the fact that too few people have come out about their status,” noted Dr. Musa Dube. But the panelists agreed that it is important to consult the family and take a measure of the community on the issue in relation to any such public announcements.

II: Theology and language to reduce stigma

“Theologians need to review theological literature so as to show some loving and care to people who are infected and affected with HIV/AIDS”. With this opening statement the panelists were unanimous in their agreement that the Bible and the Koran remain a big resource that can be used to address stigma. During the times of Jesus, people who had leprosy were stigmatized but there is a very good history of how Jesus addressed them through compassion and love and not rejection. Leaders should use the examples left by Jesus to address HIV/AIDS related stigma.

There are some efforts underway to address theological language. A curriculum has been developed for use in training religious leaders on HIV/AIDS issues. This curriculum focuses on how the leaders can mainstream HIV/AIDS into daily sermons. Liturgy is also being written to provide reference for religious leaders on HIV/AIDS when giving sermons. In Kenya, workshops have been held to sensitize Imams on HIV/AIDS “…and this is showing an impact in the Pumwani Community of Kenya” ~ Sheikh Al Hajj Murigu of the Supreme Council of Kenya Muslims.

Theologian Musa Dube emphasized the need for the Church to understand issues that drive the HIV epidemic such as gender inequality, social injustice and denial of rights. Religion needs to address women as a social category of the population that is affected by HIV/AIDS. “Religious writings predominantly come from a patriarchal culture, a fact that disadvantages women because it leads to gender inequality,” she said.

“The ABC (abstain, be faithful or condomise) language of HIV/AIDS is stigmatizing. If you go to buy a condom people will presume that you cannot do the other two!” ~ stated Rev. Heath.

There is no doubt that silence around HIV/AIDS fuels stigma, but the question is how can religious leaders help to break the silence? The panelists had the following in answer to this question, posed by the Moderator:

Stigma can be addressed through talking openly about sexuality. “Address religious leaders and empower them to talk about AIDS…develop their capacity in the language of compassion and support”. ~ Sheikh Murigu.

“Avoid inspiring fear in people; develop a theology of respect of human dignity, compassion, solidarity and mercy that inspires hope in the person. Revisit theological thinking” ~ Rev. Heath.

“Maybe we need to confront the stigma by talking openly about HIV/AIDS. Talk as if there is no stigma”. ~ Sheikh Murigu.

“Use simple language to convey ideas on HIV/AIDS. Invent new phrases because people are tired with the same old language of sin and death”. ~ Bishop Ditsheko, Regional Chairman of the Organization of African Instituted Churches.

III: Practical experiences with stigma and lessons learnt

There are various examples to show that religious leaders are confronting stigma. At the individual level several religious leaders especially from Uganda and South Africa have come out openly to say that they are living with HIV. This helps to demystify the epidemic and give it a human face within the religious circles. A good example is Rev. Canon Gideon Byamugisha who is doing a great job in fighting stigma and helping those affected not only in Uganda but also across Africa.

In Kenya, Pumwani Village, imams are talking more openly about HIV/AIDS and how the community can offer care and support to people living with HIV. However, these leaders need training and effective materials/information so that they can address HIV/AIDS issues more effectively. They should be equipped with adequate skills to openly and authoritatively speak about the epidemic.

IV: Challenges to religious leadership

The challenges that face religious leaders revolve around the development of effective religious values and the development of strategies to address stigma in the religious circles and in the community at large. There is need to develop values of love, compassion, care understanding and inclusiveness. Religious leaders need to talk more openly about HIV/AIDS and to support those who are infected with HIV. “Religious leaders need to talk methodically, endlessly and relentlessly and at every opportunity about HIV/AIDS”. ~ Stephen Lewis, Moderator.

Religious leaders have been challenged to use a language that is compassionate, loving and caring regarding HIV/AIDS. “Compassion is about suffering with those who suffer, but also working to transform the situation,” said Dr. Dube. There is need for religious leaders to share experiences that they have had when addressing stigma in their communities so that they can strengthen the effectiveness of their various approaches.

Although there are several examples of religious leaders who are open about their HIV+ status and use this to educate their communities, it remains a tremendous challenge for most to come out openly and reveal their status. Religious communities need to deal with their structures and policies to be more accommodating to clergy who are living with HIV. Religious leaders who are living with HIV need support networks that can help them to cope with their status as well as use their status as an opportunity to teach the religious community regarding HIV/AIDS. This can only happen if religion is more supportive of HIV+ religious leaders.

There is need to educate and develop the capacity of religious leaders on HIV/AIDS issues so that when they talk about it they do so authoritatively. Materials need to be developed using a simple language that communicates the message about HIV/AIDS. As Fr. Lwaminda noted, “we need to use ‘the language of Jesus’ – stories and examples that are simple and immediate to people’s everyday experience.”

Theological language needs to be re-visited so that it fits the HIV/AIDS context. There is need for a language of compassion, dignity and love that is inclusive and not exclusive to those who are affected and infected with HIV/AIDS.

There is need to address human rights, gender inequality and social injustice in addressing stigma and discrimination. The linkages between these three concepts in the context of HIV/AIDS need to be clearly understood by religious leaders, as personal behavior that contributes to the spread of HIV/AIDS must be seen in the context of social dynamics.

V. Questions and comments from the Audience

The above discussion by religious leaders led to many questions and comments from the audiences, some of which could not be addressed because of time constraints:

What is the link between stigmata and stigma? If the church is Christ’s body and the Church is affected by HIV/AIDS then the statement “The Body of Christ has AIDS” can be used as a shock language to get people to address stigma.

Answer: The church celebrates stigmata and this linkage can be used to address stigma and HIV/AIDS. If the Church is affected by HIV/AIDS then Jesus is equally affected. As a church then we can say we are living positively with HIV/AIDS. ~ Rev. Heath.

2. Do we need to re-define human sexuality and its role in the spread of HIV within the religious framework?

Answer: Sexuality in African culture was an individual affair. There is a dilemma on how best to handle this as cultures vary greatly and are so dynamic. However, there is need to create a language of human sexuality within religious institutions and in the context of HIV/AIDS.

3. In the African culture disease was a communal affair, why are we addressing it at the individual level?

Answer: Culture is dynamic and it can be re-drawn to address disclosure of the cause of death. We should also recognize that African culture, in its granting dominance to the man, makes the women vulnerable.

4. Do we need a structure in the church to be compassionate and caring?

Answer: The church needs a structure – a law that states no person will be discriminated against in church.

5. Is testing for HIV not a way of discriminating?

6. What is the church’s view regarding condoms? By the church taking such a strong stance against condoms they deny others the right to live particularly in the context of discordant couples.

7. In Somalia a workshop was held to raise the awareness of religious leaders on HIV/AIDS. This has proved to be a very good method because the leaders have started talking openly about HIV/AIDS.

8. How does religion in Kenya address sexually active Kenyans (including homosexuals)? What is the religious position on condoms?

Answer: There is need to develop a theology that embraces all people. Marginalized groups need to come out and challenge the church on this issue. Religious communities need to deal with people and their needs without categorizing them as sinners or non-sinners. The religious leaders do not want to agree that they do not know how to deal with HIV/AIDS and related stigma and discrimination – they have taken the position of God to judge others. They have to agree that they do not have all knowledge and answers to this problem.

The religious sector needs to think about linking with non-religious sectors as a way of moving forward.

A lady in the audience gave a moving story of how she had received support from her church despite being HIV+. She is using her experiences to talk to others within the church on positive living

V: Recommendations for moving forward

The panel of religious leaders made the following recommendations as the way forward in addressing stigma and discrimination:

1. Address HIV/AIDS as a disease like any other, don’t create unnecessary fear in people or feed the attitudes that stigmatize people;

2. Develop policies and structures in each religious community to deal with the HIV/AIDS epidemic as well as those members who are living with the virus, and use these to strengthen public and legal advocacy;

3. Document the religious responses to HIV/AIDS so that experiences and knowledge can be shared;

4. Develop the capacities of religious leaders through training programs and experience sharing on HIV and AIDS;

5. Revisit and make use of the sacred texts and other theological language that can provide more support of people living with HIV/AIDS. Simple and compassionate language is very essential, as is the careful use of all language to provide positive reinforcement;

6. Address sexuality in theological language;

7. Encourage different religions to work together and share information and expertise on HIV/AIDS;

8. Develop policy statements for working with people living with HIV/AIDS, which will provide an opportunity for inclusiveness within all religions.

Annex 1: Topics/Questions for discussion:

1. Reality of stigma and discrimination for those living with HIV/AIDS

a) How do you experience stigma and discrimination?

b) How have you seen stigma experienced inside your religious communities?

c) What are obstacles and/or barriers to overcoming the problem?

2. Theology and language to reduce stigma

a) What efforts are underway to develop theological tools for responding to AIDS and reducing stigma?

b) How do we develop language that emphasizes compassion and inclusion drawing on religious teachings?

3. Practical experiences and lessons learned

a) What examples are there of how religious leaders are effectively confronting stigma?

b) Where are there gaps or difficulties?

4. Challenges to leadership

a) What values need to be promoted that can counteract stigma at various levels?

b) What can religious leaders do to reduce stigma in their religious bodies?

c) What can they do to reduce stigma in the broader society?

5. Recommendations for moving forward

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