MAP Workshop, Kigali, June 2007 Jean Delion

1. Significance of multisectoral response in breaking stigma in MAP MAP Workshop, Kigali, June 2007 Jean Delion

2. Stigma, mark of infamy or disgrace • Stigma: “a mark made with a burning iron” or “any mark of infamy or disgrace; sign of moral blemish; stain or reproach caused by dishonorable conduct” (Webster Dictionary) • The public’s attitude toward a person who possesses an attribute that falls short of societal expectations. The person with the attribute is “reduced in our minds from a whole and usual person to a tainted, discounted one (E Goffman) (Ref. detailed in 2 docs from H Binswanger available to participants)

3. Stigma = shame and fears • Stigma is an expression of social norms set up by people in power (meiji and Heijnders) • People afraid of HIV-AIDS “mark” infected people, contrasting them with other people, pointing at them as being different and “dangerous” (Parker and Aggleton, Bos) • Stigma builds upon, and reinforces, existing prejudices. It plays into and strengthens existing social inequalities – especially of gender, sexuality and race (Brown et al.; Nyblade, Heijnders)

4. Stigma can kill, directly or indirectly • Stigma on HIV-AIDS deeply rooted in individual and societal attitudes: eg. on sexual relations, on death. • Famous example: M. Mead – “Sex and Temperament in Three Primitive Societies” – 1935 - Trobriand Islands - • It is reflected in behaviours seriously undermining the rights and dignity of infected and affected • Stigmatized people face resentment, isolation, ridicule; they are denied participation in family/ social life, access to their rights and basic services • Example Togo 2002: mother LWHA isolated in a piggery outside the village and left to die, marked as a witch

5. HIV infection carries a high level of stigmatization • People infected with HIV are often blamed for their condition and many people believe HIV could be avoided if individuals made better moral decisions • Although HIV is treatable, it is nevertheless a progressive, incurable disease • HIV transmission is not fully understood by some people who feel threatened by the mere presence of the disease • HIV-related symptoms may be considered repulsive, ugly, and disruptive to social interaction • In the case of PLWHA, stigma is a strong disincentive to use existing services for fear of being “marked”

6. Examples of people often stigmatized • Commercial sex workers seen as morally decadent people • Although HIV is treatable, it is nevertheless a progressive, incurable disease • HIV transmission is not fully understood by some people who feel threatened by the mere presence of the disease • HIV-related symptoms may be considered repulsive, ugly, and disruptive to social interaction • In the case of PLWHA, stigma is a strong disincentive to use existing services for fear of being “marked”

7. Social groups produce stigma - with LR/BCC support they can reduce it. • Stigma is one of the social dimensions of the fight against HIV-AIDS. Other social aspects include culture, values, norms, power relations, gender. • Need to go behind IEC, to guide societies, communities, small groups to adjust values, norms, regulations, to reduce stigma. • Communities and small groups are very influential to shape behaviors and enforce social norms • LR grants and BCC in MAP can be powerful incentives stimulate effective social responses.

8. What can NAC do to reduce stigma on PLWHA? • Act on the image associated with HIV-AIDS reducing negative connotations (using media, role models, supporting PLWHA inclusion) • Assist communities to identify social factors on which they can act, use LR grants as incentives to change norms and support behavioral changes. • Assist PLWHA to rebuild social capital: to get positive social signals, to be useful to society (prevention, counseling). To get support • Train services providers to be aware of stigma inside and around them and overcome them.

9. Examples of actions to reduce risky behaviors and access services • Proximity groups (family, peer groups, friends, community) the most effective to bring people to take precautions, do a test, to visit doctor • Intensive actions with target groups: home visits to seropositive pregnant women to try and bring husband, to accept test/ treatment • Intensive actions (peer pressure) among youth, sex workers, soldiers, truck drivers • Bring tests and services close to people (free as much as possible) and reduce fears to use them

10. Yes, NAC can measure stigma reduction • Stigma reduction translates into improved MAP scorecards indicators on prevention, access to test, treatment, support services • Stigma level can also be rated based on data such as : Nb of people who collect and discuss tests results, nb of partners of pregnant women who take tests and results, nb of PLWHA satisfied with the way they are treated in their communities, nb of PLWHA testifying in public

11. Qualitative studies can assess stigma • Beneficiary Assessments are effective tools to shade light on stigma and other social factors: SD specialists take time to build trust with people and ask their deep feelings • Focus groups with PLWHA and groups representing various segments of society allow to ponder individual opinions • Open questions to religious and traditional leaders can capture evolution of values and norms

12. Who can help the NAC to address stigma? • Anthropologists, sociologists, faith based organizations and leaders of PLWHA • BCC (not just IEC) specialists, social workers in NGOS, with PLWHA, youth organizations • NAC, UN agencies, International and National NGOs, the WB can organize exchanges among practitioners at sub-regional level. • The WB as “Knowledge bank” will train its SD specialists, will disseminate publications, best practices, manuals, evaluation methodologies.