“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”
AND RELIGIOUS RESPONSES
An overview of issues relating to stigma and the religious sector in
D. Campbell – International Health Programme Consultant
Alison Rader – HIV/AIDS and Community Development Consultant
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
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
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
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:
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.
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.
(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
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
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
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
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.
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
(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
(6) How can capacity for shared confidentiality within groups be linked
to scaling up both care and prevention action and impact?
(1) Consultation with Christian Development Organizations and UNAIDS for
Collaboration on HIV/AIDS-Related Issues, Botswana (March 2000), Journey
(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 : email@example.com
(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: firstname.lastname@example.org