HIV/AIDS, STIGMA AND RELIGIOUS RESPONSES

1.   A movement towards spiritual health - perceptions and realities

Religion is a structural representation of personal faith within people.   The aspect of personal faith is often neglected in debate and perceptions about religious organizations and leadership.

Religious groups, in general, have a reputation for responding to the issue of HIV in negative terms.    Factors that influence this perception have included judgmental comment from religious leaders; debate about condoms;   and an obstructive stance towards policy development, particularly regarding drug use, commercial sex, and harm reduction approaches.   The religious sector has been largely unwilling to engage in any way that could imply dilution of moral standards. As a result, people with HIV have experienced rejection by religious people, congregations or institutions.

Such experiences have been widely shared, yet is this the whole story?   Have religious organizations been stereotyped before they are given a chance to respond?   Why has it taken so long (15 years) for the role of religion in Africa to be affirmed rather than discouraged?    What have been the assumptions on the part of governments, WHO (GPA), UN co-sponsors, and UNAIDS (since 1996)?

Not all religious organizations or congregations are responding – many have not yet taken it as their concern, yet at the same time, congregational and personal response has been happening which is more difficult to accumulatively measure than the more visible organizational response.   The perception and reality are not always matched.

While many have not responded quickly, some faith based groups have been working in community based care and prevention and have had clear experiences of stigma reduction in whole communities. There has been characterization of a relationally based community development approach that affirms a wider confidentiality determined by the community that is a safe haven for expansion of response for inclusion.   This is in contrast to community fear, lack of inclusion, and stigma. The fact that religious communities are usually interwoven into the wider community is a major asset and strength for scaling up, for sustaining response, and for promoting mutual healthy accountability for care, support and change.

The acknowledgement of capacity for personal faith, is critical to effective community response.   Intimate sexual and drug using behaviours do not change easily, yet faith based motivation is a hugely powerful internal response that is largely untapped.   Politics, environment, poverty, gender insensitivity, and power inequity influence motivation but do not touch the soul of a community in the same way as relationship based respect for spiritual capacity.   Facilitation of local family and neighbourhood spiritual connectedness is a key foundation for effective response.

Efforts have been made to analyse the effect of accumulating loss on the hope of persons with HIV, their families and communities.   The analysis has been linked to faith, to views about the future and to stigma reduction.

2.   Response by religious organizations

Religious organizations and leaders have obstructed response.   Often this has happened in a context of passionate defence of moral principle, consistent with their vocation and vision of service to God and to people; yet also with too much distance from local reality.

‘Morality’ can be received as affirmation of the mutual good, without assumption or judgement or exclusion.   It can be an expression of solidarity, containing beliefs that are offered and often owned by the wider community.    Articulation of religious values and norms can be part of the community identity rather than an imposition.

There can be dysfunction between beliefs and practice, in any organization.    With religious people, vision is not in question generally, because it is not difficult for people to subscribe to the concepts of loving care and the need for hope.   However, corresponding practices are often in question.   For example, instead of a participatory approach, an imposing or provider approach is dominant.

For the religious sector there is an immediate need to develop convictional motivation based on theological grounding for both beliefs and practices.

As leaders engage in the life situation of people with HIV, almost inevitably, perspective shifts.   This was the case for those involved in exposure visits preceding a consultation of church leaders with UNAIDS held in Botswana in September 1999.   As leaders met with families with AIDS/HIV in their homes and as they participated in neighbourhood discussions, pain was felt, compassion deepened and commitment to involvement grew. It was also significant that the programs they visited were run by faith based groups.

The Botswana consultation was part of an African initiative to strengthen action by people of Christian faith in their own local communities, as part of those communities, and also as part of the church.   (see attached vision and direction framework developed for the Consultation with Christian Leaders, Development Organizations and UNAIDS on HIV/AIDS Related Issues, held in Botswana in September 1999)(1).

There are other examples of innovative engagement, through which some pathways for shared response can develop -- including religious organizations and faith motivated neighbourhoods and other communities, within wider societal and political response.

Examples already exist, and are developing, of interfaith dialogue and co-operation in relation to HIV/AIDS.   These include:

o   In 1998, a ‘Conference on AIDS and Religion’ was held in Senegal(2).   After a presentation by a Christian organization of community and home based approaches within countries such as India, Haiti, Kenya and the Philippines, an Imam commented: ‘We can work together in the community.   We believe in family and reconciliation with God.    You believe in relationship between people representing the process of relationship to God.   Government is promoting community ownership which depends on good relationship.    We can all share on this point.’

o   In Hikkadua town, south of Colombo, Sri Lanka, a Christian team which has been doing home care in Buddhist neighbourhoods for four years has recently been invited to the local Buddhist temple to facilitate discussion between members of the local community(3).

o   The Africa Regional Forum of Religious Health Organizations in Reproductive Health is based on partnership between religious health networks, Christian and Islamic.   The Forum, facilitated by International Family Health was launched   at the International Conference on AIDS and STDs in Africa, September 1999.(4)

o   The UK NGO AIDS Consortium is sponsoring a series of meetings on responses to HIV/AIDS by faith based organizations(5).

o   The draft declaration of UNGASS (April 2001) affirms the necessity of faith based organizational response(6)

These and other examples represent increased confidence within secular   organizations to explicitly affirm, respect, and engage with religious organizations, faith based communities and persons of faith.

3.   What has the experience of some faith-based responses shown about reducing stigma? Some key themes include:

(1)   Care
This is usefully characterised as a supportive presence that accompanies people in their situation, for example, visiting a neighbour or a community visit. Care is sometimes named as ‘love in action’; it includes mutual support between family, neighbours, community, and a relationship of being with and interacting with others.    This understanding is in contrast to the common view that care is provision of treatment.

(2)   Change
Change occurs by seeing care (or experiencing care), which leads people to acknowledge the reality of HIV, and may result in a change in understanding and attitude.   Care helps to make change more likely to happen especially when care is explored in the home setting. Change does not happen simply in persons in isolation but when the care and change process is relational in nature, change is expansive. It is a foundation for going to scale, and for organizational and institutional adaptation, as a contributing influence in scaling up response.

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(3) Link between care and change
The link between care and change is relational. Care that is personal and is observed by people in the household and neighbourhood, can generate motivation and action for shared change. This can rapidly shift a situation from stigma to shared responsibility for change around issues of mutual concern.

The care to change linkage is also termed ‘care/prevention’ linkage. It is a key strategic approach to expansion of circles of involvement in local community and organizational responses to HIV/AIDS.

(4) Distinction between public disclosure and shared confidentiality Shared confidentiality is shared knowledge and understanding of meanings within a context of respectful intimacy within a group in which there is a sense of mutual accountability. Knowledge that is shared in this context is not a secret. The content and meanings are known within the group, even though there is not necessarily open conversation about the content and meanings.

People in local neighbourhoods live in an environment of shared confidentiality, referring to the inevitable diffusion of information that helps shift secrets to shared knowledge, shared understanding and shared safe intimacy, which is a confidential environment. Recognition of this community capacity is an entry point to disciplined community counselling, which can rapidly accelerate commitment toward prevention processes by local communities, as well as to care for each other.
It is possible to counsel a community on the basis of shared confidentiality, without HIV positive members of the group having to verbally disclose their status, and this has been found to be an effective environment for stigma reduction and normalisation.

The person centred nature of the confidentiality experienced in a home can shift to issue centred confidentiality in a community discussion which helps share responsibility and influences prevention in the whole group(7).

SHARED CONFIDENTIALITY – A PATHWAY TO STIGMA REDUCTION

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4. Suffering, participation and faith

How can a health or other team enter the heartbeat, the soul, and spirit of a community? Clearly, by invitation with appreciation of local strengths, and belief in the capacity of local people to care (or love), belong, change and hope. Yet also with an acknowledgement of spiritual capacity inevitably linked to belonging to the future as well as the past and present. This approach generates hope for quality of life, allows for adequate remembering and continuity even with the reality of accumulating loss and deepens the understanding that community and relational health are indivisibly linked to spiritual health.

There is a great difference between participation and observation. On
the one hand it is possible to be sympathetic and to do things for people even as an observer but this is insufficient for sustainable hope to develop. HIV/AIDS is an issue that leaves problems with people - problems that accumulate if unattended and problems that do not go away from homes simply because a person has attended a clinic or a hospital or because they have received a home visit from an outreach team. People have to live with the epidemic - and “we” need to be inside that experience, which is an ongoing conversation about loss, hope, and therefore about desire for the future.

This is inextricably linked to a mysterious yearning for connectedness, and for a future that is unseen as well as seen. It is speaking therefore of the experience of faith - reaching out for something beyond what human beings can touch and articulate, something bigger than we are. Faith is about innate desire to touch the essence of creativity and creation, and of relationship that can always be better than what we feel it is at the moment, and that recognises people in a spiritual situation, where God is, and where hope is glimpsed. Such faith is not naive - it is realistically grounded in honesty, and recognition of loss and pain.

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5.   Some key operational research questions

(1)   What are the characteristics of an integrated care and prevention approach that allows for conflict resolution and results in stigma reduction?

(2)   Within the local community experience, how can personal faith be explored, respected and affirmed as a fundamental strength for community response and destigmatization?

(3)   Regarding partnerships of the religious sector (with other organizations), how can theological principles and identity be expressed respectfully, and linked to practices that are encouraged by the partners (such as counselling, community choice making in behaviour change, harm reduction, family protection etc.)?

(4)   What evidence exists that organizational response can be accelerated by community participation approaches that involve people, including leaders, from the religious sector?

(5)   What is the impact of accumulating loss in families and communities?   How does faith and future hope interrelate with the accumulating loss?

(6)   How can capacity for shared confidentiality within groups be linked to scaling up both care and prevention action and impact?

REFERENCES

(1)   Consultation with Christian Development Organizations and UNAIDS for Collaboration on HIV/AIDS-Related Issues, Botswana (March 2000),   Journey into Hope

(2)   1st International Conference on AIDS and Religion, Dakar, Senegal (1997) sponsored by UNAIDS, Geneva.    http://www.unaids.org

(3)   Report of the first cross-regional consultation of programme facilitation teams (India and Asia/Pacific) (February 2000).   The Salvation Army International Headquarters, London, UK

(4)   Xth International Conference on AIDS and STDs in Africa, 12 – 16 September 1999, Lusaka, Zambia, African Regional Forum of Religious Health Organizations in Reproductive Health – an initiative to promote opportunities for increased advocacy and experience sharing among religious health organizations in Africa, prepared by International Family Health, Parchment House, 13 Northburgh Street, London EC1V OJP

(5)   UK NGO AIDS Consortium (February 2000).   E-mail :   ukaidscon@gn.apc.org

(6)   Available through the UNAIDS website -   http://www.unaids.org

(7)   Available from NGO Health Networks workshop on shared confidentiality, February 2000.    Networks for Health, 1620 1 Street NW, Suite 900, Washington DC 20006, USA.    E-mail:    rhope@dc.savechildren.org