Strategies for working on the theme “stigma”

In 2001, the AIDS Programme will begin work on stigma. Although Panos has covered this topic in the past - in particular as part of its analysis of human rights in the late 1980s - and although there is widespread awareness of the extent and impact of stigma, we believe that the phenomenon as it relates to AIDS is still little understood. As a consequence, the responses to stigma, by policymakers, non-governmental organisations, the media and others are consequently ill thought out and ineffective. Stigma continues to represent a considerable obstacle to AIDS prevention and care efforts, even in regions such as Southern Africa where the epidemic is most widespread and one would have expected ubiquity to have led to tolerance and understanding.

Currently, there is no one definitive framework for understanding stigma.  Clearly stigma occurs at a number of levels: social, institutional, political and psychological. It also has a number of different manifestations within each level. And at each level, stigma can be overt or covert, direct or indirect.

Overt AIDS stigma, directly targeted at individuals or groups is the most visible and therefore the easiest type of stigma to deal with. When someone on the street insults a person living with HIV, or when a health official denies a patient’s rights then a problem is clearly defined.

Often stigma is less direct, it is covert. One example of this covert stigma is shown by the inability of a bereaved family to acknowledge AIDS as the cause of death. Another example would be the lack of eye contact in institutional service provision for those living with HIV. These kinds of stigma are much more difficult to work with.

Often stigma is not due to the presence of the Human Immunodeficiency Virus. Instead it is due to a whole series of assumptions about what the presence of the virus implies. These assumptions can relate to class-status, sexual morality, hygiene, gender, ethnicity and so on. So when a woman living with HIV is refused a job in Johannesburg, this may be as much to do with the employer’s social prejudices, as it has with the fear of the virus, and the workers long-term health prospects.

The Panos Southern Africa AIDS Programme holds that HIV thrives in a climate where people with HIV/AIDS face blame, discrimination and stigma. Effective prevention  –  and care of people with AIDS  –  depends on deep-seated social change within societies which, instead of socially isolating people with HIV, creates a climate in which they can take a leadership role in education and prevention.

Stigma is primarily a problem in communications and human relations and it is therefore appropriate to approach the problem using the methodologies developed for this kind of problem. The UNAIDS Communications framework and the Rockefeller, Panos and Communication Initiative offer powerful tools and directives for working with issues such as stigma.

The Stigma Strategy

Our main concern throughout will be to promote the voices of those most affected by HIV/AIDS related stigma, in particular through working alongside organisations of people living with HIV. With these partners we will explore ways at approaching stigma as it is manifest in each of the contextual domains listed above.

The Panos Southern Africa AIDS Programme will apply the contemporary communications frameworks described above in order to tackle the problem of stigma. To illustrate this application, stigma can be understood within the five domains of context used in the UNAIDS framework. The aim is not to target individuals’ stigmatising behaviour, but instead to address the contextual domain which influences that stigmatising behaviour.

In all this work we acknowledge that the greatest resource when working with stigma, are people living with HIV. We further acknowledge that any partnership activity with people living with HIV should benefit this group both in the long-term (in fighting stigma) and in the short term (practical material support).

Contextual domain 1: Government Policy in Southern Africa

Government policy can reinforce stigma, or it can help tackle the problem of stigma. Laws can be passed that discriminate against people with HIV, or they can be passed to prevent such discrimination.

In Uganda, for example, political leadership was critical in placing HIV/AIDS clearly and firmly on the public agenda. Although the Ugandan government did not fully embrace the sexual health messages promoted in the West, for example on the promotion of condoms, their willingness and openness in confronting issues around HIV was enough to enable many other efforts within society to flourish.

Any AIDS communications programme needs to take into account the policy context at is relates to stigma.

Contextual domain 2: Spirituality in Southern Africa:

We have already noted how spirituality in Southern Africa plays a central role in the lives of many people. Faith institutions often represent the primary support system for those living with the virus. They also often represent the primary moral code. In a recent email discussion forum “stigma-AIDS”, participants noted how different faith organisations can work to promote or to challenge stigma in a number of different contexts.

Any AIDS communications  programme needs to take into account the spiritual context at it relates to stigma.

Contextual domain 3: Culture in Southern Africa

The relationship between culture and stigma is complex. Cultural factors such as codes of morality, sexuality, and categories of relationships can all have an affect on stigma. In Southern Africa where among many groups there is a

stress on family and community, and where “shame” is often thought of as one of the harshest kinds of punishment, the dynamics creating stigma are easily apparent.

Any AIDS communications programme needs to take into account the cultural context at it relates to stigma.

Contextual domain 4: Socio-economic status in Southern Africa

Southern Africa is characterised by poverty, and massive gaps between the rich and the poor. This can create a situation where the general standard of education is poor – and stigma can often be generated from a fear of the unknown. Expensive information campaigns aimed at challenging stigma are beyond the reach of many countries. Also, where poverty leads to limited health care, there may be a closer association between HIV and death, another dynamic leading to stigmatisation.

Any AIDS communications programme needs to take into account the socio-economic context at it relates to stigma.

Contextual domain 5: Gender in Southern Africa

Where men’s and women’s roles are tightly defined, any transgression of norms can lead to ostracisation or stigma. In Southern Africa there is very little acceptance of sex between men. This gender choice is “off-limits” and if men who have sex with men contract the virus, then they will often face intense stigma. Similarly in a region where women traditionally have to remain faithful to one partner, contracting a sexually transmitted infection such as HIV can have associations of promiscuity, another dynamic underlying stigma.

Any AIDS communications programme needs to take into account the gender context as it relates to stigma.

Africa Alive and Stigma

Introduction

Africa Alive! is putting together a number of simple, cost-effective ways of further addressing stigma, and affecting a shift in social norms, particularly among young people--the target audience for Africa Alive! 

The approaches involve getting young people actively engaged in open public discussion around HIV/AIDS in the broadest context of how it affects their lives, their aspirations, their relationships with partners, family, community, opportunities in the future.

The vehicles for that public discussion are not new, but in this case are given fairly high profile.  One is through "postcards" or letters which they youth send to Africa Alive! and which will be then put up on our website and into any other local media that will collaborate.  This could then extend into a penpals idea to broaden involvement and positive action and perhaps galvanize support in other parts of the world.

The other idea is to get weekly personal diaries into local mass media--both radio and print--written/presented by people living with AIDS, preferably, for the audience, young people (15 - 24). again, diaries have been done before on a small scale but when done well they can be very powerful.  Africa Alive would like to scale up that idea although, they recognise that writing clear, effective, moving diaries is not a simple task and needs a good editor to guide the process.  For this reason AA! need to do some training of media producers (particularly radio or TV, but print, too) as well as the diarists themselves to make sure the quality and impact are high.

In practical terms this means that Panos – and possibly SAfAIDS – will provide the capacity for some of this work, by means of a new Programme Officer (funded by Africa Alive) and also perhaps in terms of radio capacity (radio technology for Panos Southern Africa, funded by Africa Alive)

Possible partnership roles

Press

There is the possibility of bringing the diaries, and also the postcards into the Panos/ RHAIN (Regional HIV/AIDS Information Network) African media projects that are running or are being planned:

a)     by collaborating to ensure that the diarists (particularly young people living with HIV) are given a regular column in an in-country newspaper. This would involve basic writing skills, and also probably some editorial support - making the diary as readable as possible. As far as the diarists were concerned, this would be not only a chance to express themselves in the national media, but also useful media training - which would enhance their career prospects.

b)     by helping feed the diaries - and possibly selected postcards - into other media products. Examples include the planned pan-African Panos/IPS AIDS media product, the Oneworld Web-based AIDS Channel (another Panos partner), SAfAIDS media products, and IRIN news outputs (within the RHAIN initiative), and the mainstream press in Africa and also possibly beyond - perhaps bring Panos' Media and Communications Dept in.

c)     by providing practical communications support to diarists - perhaps by linking them in a discussion group (using HST Health Service Trust or HDP Health and Development Networks).

d)     also by sponsoring computer access - perhaps working with the NAP+ (Network of African people living with HIV) in-country partners. Panos has been exploring partnerships with these networks, and they are very keen for any communications support that we can offer. One idea would be to try and source our print and broadcast diarists from the NAP+ offices - and then provide a computer for them to work on - and also try and offer whatever training we can.

Radio

There is the possibility of us working with radio-journalists around Africa to

a)     help "mentor" the diarists providing radio skills - while maintaining the original voice and "human face" of the narratives

b)     record the diarists - and then to send the recordings to in-country community-based radio stations and also sending (electronically or by post) to Interworld Radio who will load the sound files up on the web, and disseminate them to radio stations world wide as a regular weekly or monthly branded Africa-Alive/Panos media product.

c)     possibly to secure some radio time - which may mean buying radio time - in order to promote the Africa-Alive diary initiative within each country context

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