by Nkangabwa James and Nathan Nshakira

The following case studies illustrate some of the manifestations and impacts of stigma and social exclusion in the lives of women in Uganda as well as efforts to address them. Case Study - Women facing up to HIV/AIDS: “…My children were sad and asked me whether I was going to die very soon. The reaction from the public was less sympathetic, many people laughed at me when I told them that I had the disease…. My brothers-in-law were particularly difficult, some of them wanted to remarry me, when I told them my sero status they got angry. One of them tried to chase me away from my late husband's land, but he later gave up when he saw that I was not willing to move away." – Florence a 28 year old widow, living with HIV/AIDS and with eight children Like Florence, almost each family in Uganda has suffered or at least been affected by the death of a relative or friend, and as such, nearly all have been “victims” of AIDS. Nonetheless, people with HIV/AIDS continue to be stigmatized, discriminated against and excluded. Women and girl children are the main caretakers for the sick, and AIDS-related illnesses have exerted a greater burden on them. In response to this burden, some organisations and community-based groups have provided emotional and social support to affected people and families, mainly through home visiting and counseling to the infected as well as affected people. It was one such Community Based Organization (CBO) that helped Florence cope with the disease when she was diagnosed HIV-positive. Florence joined Iganga District AIDS Concerns (IDAC), a local CBO that runs a clinic every Wednesday. Here she received counseling and treatment for opportunistic infections at a cost of shs 500 (about 30 US cents). “I have benefited a lot from attending the clinic at Iganga. The counselors helped me to understand my situation and gave me advice on how to live positively with HIV/AIDS”. Florence together with other women living with HIV/AIDS started going out to the community to sensitise people about AIDS. In 1995, these efforts resulted in a district branch of National Community of Women Living with HIV/AIDS (NACWOLA), that gives emotional, social and economic support to the 65 registered members, and raises funds for income generating activities in addition to community AIDS education. In 2000, Florence realised that while she was teaching people in other communities, there was a significant degree of ignorance about HIV/AIDS in her own community. So she started the Buwolomera Development Agency, BUDA, which currently has twenty female and three male members. “Most of them are living with HIV and I encouraged others to go for a test and then join us to teach our people about this disease.“ Florence says most men are reluctant to join the group, but she is determined to teach women so that they can spread the word to their husbands. “It is time for women to come out strongly and show men what we can also do. I have inspired many people in the community to come out openly and live positively with HIV. They come to me to share their experiences and seek emotional support. I know I will not be around for a long time, so I want others to learn and to start teaching others so that when I die, there are others to do the job. That is the only way our children will survive falling in the trap that we fell into.”

Case Study - Coping with teenage pregnancy in Mubende District “I am not supposed to see other members of my family at all; my father considers me a disgrace to the family. When I discovered that I was pregnant, I had to drop out of school. Studies were over for me.” – Nampijja, a 15 year old mother, living on her own Like Nampijja, education for countless Ugandan girls comes to a standstill when they get pregnant. In most cases, they are impregnated by people well known to them including teachers, relatives and close family friends. Even after giving birth, these girls cannot go back to school. At such a tender age, some of them are forced to marry the same men who defiled them while others are forced to take responsibility of their children and are resigned to a life of domestic chores. Apart from the exclusion from school and termination of all opportunities for self-development, such girls are at risk of unsafe abortions, infection with HIV and other STDs. Meanwhile, as the girl suffers these consequences, most times the father of the child is left unaccountable. In the year 2000, concerned community leaders, working together with AAU, undertook a process to address the plight of the girl child in Mubende district, that included: Formation of a district education task force composed of community leaders, district government staff, the police and development agencies to lead the process. Fact finding and sensitisation visits to seven schools, including dialogue with teachers, parents and others in authority to discuss what action is needed. Teachers in the seven schools as well as members of three CBOs were trained in life-skills development. A live phone-in programme with a local FM station to sensitise the community on rights and roles of children, as well as the responsibilities of various stakeholders to educate children, and also to seek people’s views on the way forward. Engaging a local drama group to sensitise communities on the dangers of AIDS and its prevention, the human rights issues related to HIV/AIDS, and the importance of education for personal and community development. The play has been recorded on video for other audiences as well. The task force has been facilitated to visit three organisations involved in similar work in Kampala, to share experiences and to learn from their projects. The major challenges to this pioneering work include: The negative attitude in the household, school and community-level about girls getting back to school after giving birth, and Ineffective enforcement of the laws and policies that provide for the protection of the rights of affected girls to education, restitution after defilement and appropriate information about sexual and reproductive health. The project now aims at strengthening the efforts by creating crisis support centres in the district to provide: Counselling to both affected children and parents Sexual and reproductive health training and information Contraception options Linkage to other organisations for legal support

While stigma and exclusion are deeply embedded in the history of human society, the analysis and responses to mitigate their effects are a more recent phenomenon. The HIV/AIDS epidemic has not only introduced a new basis for stigma and exclusion, but it also has prompted a flurry of programmes to prevent and/or mitigate the effects of this stigma. Communities in Uganda have been affected by historical stigma and exclusion based on gender, generation, ethnicity, health status and geographical isolation among other factors.

The HIV/AIDS epidemic has ravaged many communities in Uganda, thereby compounding the stigma and social exclusion of infected people as well as others affected by the disease such as family members and orphans. An analysis of the basis and manifestation of stigma and social exclusion, as well an examination of the responses to mitigate their social and economic impacts is necessary for improved understanding and action.
In its most general sociological sense, the term stigma can be used to refer to any attribute that is deeply discrediting and incongruous with our stereotype of what a given type of individual should be (Kando, undated). Stigma acquires its meaning through the emotion it generates within the person bearing it, and the feeling and behaviour towards him/her of those affirming it (Cumming & Cumming 1972). In a study to understand poverty and its manifestations in Uganda (UPPAP 2000), exclusion is described as a situation where an individual or group of people are shunned, and usually not included in community activities and gatherings due to some handicaps. Exclusion is often based on perceived personal or community misfits such as ill health, illiteracy, widowhood and extreme poverty.

This paper presents an analysis of stigma and social exclusion as based on four main determinants, namely;

• Geographical remoteness and communication isolation
  
• Gender and generation differences, as they affect children, adolescents and women
  
• Economic class - with the poor being particularly vulnerable to exclusion
  
• Disease and health status – especially based on perceptions of how contagious a particular health condition may be, and the association of particular health problems to immorality and other despised social labels.
  

Geographic Exclusion

Geographical remoteness from centres of trade, development and other social services contributes significantly to social exclusion of people and societies. Parts of the country that are far away from the capital cities, or whose access is blocked by barriers such as mountains, forests or water bodies, usually remain isolated and underdeveloped. For example Uganda’s Kalangala district, composed of 84 islands in Lake Victoria, is one of the least developed. With over 50% of the population being illiterate, its greatest barrier to development is seen as poor transport links with the mainland, fragmentation of the land body, and exceptionally high costs of administration and delivery of services.

Gender Based Social Exclusion

The cultural construction of gender relations presupposes and reinforces the inequality and subservience of women and girls in relating to men and boys. (Gender relations in a society are also power relations in which women are subordinate and unequal to men (Albertyn 2000). The general lack of power in a society by women over their bodies and sexual lives, supported and reinforced by their social and economic inequality, puts them in a position that favours exclusion by men in particular and community in general. Women and girls in Uganda do not enjoy equal rights within marriage and the girls in some communities are still subject to forced marriages. Women are denied equal rights to marital property and have little opportunity to initiate or oppose separation or divorce and get legal or social support in their stand.

Adolescents in Uganda often lack basic reproductive health information, skills in negotiating sexual relationships, and access to affordable and confidential reproductive health services. Many do not feel comfortable discussing sexuality or their reproductive health concerns with parents or other adults, thus limiting their opportunity to learn.
The nature and extent of sexual violence also reflect pre-existing social, cultural and economic disparities between men and women. Available data indicates that between 16-52% of women throughout the world have been assaulted by an intimate partner (UNDP 2000). The consequences for disclosing sexual victimisation may be disastrous and can include rejection, “social death” and further violence. It is generally acknowledged that the shame and stigma associated with the experience of rape, together with perceived or genuine obstacles at every step of the judicial process, result in a significant degree of under reporting. Victims of rape and sexual assault may be made to feel some degree of responsibility for “provoking” the attack, or guilt for being unable to defend themselves. For some, violence may be perceived as inevitable. Sex workers, for example, are unlikely to receive a sympathetic hearing or justice when assaulted.

Economic Exclusion

Economic factors that enhance social exclusion include extreme levels of poverty and the strategies often employed to overcome the poverty. For example, women and girls living in absolute poverty may offer sex because of economic need, while families in similar circumstances may give their daughters in marriage. Bar owners (most of them single mothers) in Kalangala for instance, upon realising that beer sales are higher when clients are served by attractive girls, have intentionally gone to the mainland in search of beautiful girls. These are rotated every two to three weeks to ensure that customers do not get bored. In a wealth ranking exercise in Kalangala, very few women were found among the wealthiest classes in the communities. This is partly due to the fact that married women are often prevented from working by their husbands, the latter thinking that women would eventually become uncontrollable. Another reason that women have disproportionately less of the wealth is that they generally have limited control over productive resources that are crucial for survival on the islands such as land and animals.

Health and Social Exclusion

Social exclusion based on health status dates back into biblical times when lepers and the blind were given special and easily identifiable features. Special practices were developed for their management and care, which frequently included patient isolation and the wearing of protective gear by medical practitioners and personal caretakers. Other health problems such as mental illness, epilepsy and physical disability have also been a basis for exclusion and stigmatisation. Likewise, diseases perceived to be infectious whether based on biomedical evidence or not, are another common source of social exclusion. Small pox, tuberculosis, ebola and sexually transmitted diseases are examples which have been highly stigmatised.

HIV/AIDS is a more recent disease that has been highly stigmatising and has resulted in the exclusion of certain sections of society. The manifestation of stigma in AIDS is normally two-fold. People with HIV/AIDS normally develop personal feelings that lead to their withdrawal from community. This withdrawl is compounded by the fact that other community members shun people with AIDS as a means of condemning them for what they brought into the family or community. The impact of such stigmatisation impacts negatively on the psychological health of the “victims” thereby compromising home care and support, as well as outside services. In extreme conditions, some HIV positive people may develop feelings of revenge and act out against others.

Generally, women and girls are socially excluded in society and among people with AIDS, women are particularly stigmatised. The fact that women and girls have little or no role to play in initiation and enjoyment of sex, in negotiation for bridal wealth, or widow inheritance are a few illustrative examples. These factors not only increase risk and exposure to HIV infection, but they also reduce the possibility and opportunity for negotiating options for personal protection. Women are also seen as spreaders both within and outside relationships. Prostitutes are specifically targeted in this situation as perpetuators leaving behind their clients who are mostly male. In the event of the death of a man due to AIDS, his wife is denied a share in the distribution of the deceased’s wealth under the pretext that she is the one who brought the disease that killed the man. In the event of the loss of a daughter in the family due to AIDS, mothers are blamed for not having given proper guidance even when such daughters left the homes long ago.

The stigma of AIDS, whether the victim is a woman’s husband or a family member, is such that there is often no means of emotional or social support. In the event that the woman herself is HIV positive, the social isolation and resulting depression tends to lead to her degenerating faster and dying earlier than would necessarily be expected. Young children are often left orphaned after the mother dies of AIDS.
Key lessons learned

Geography, gender, poverty and disease can all contribute to social exclusion. For some, the emergence of HIV/AIDS has led to the further stigmatisation and exclusion of people and communities, especially women who are economically and sexually less independent and therefore, they are often more vulnerable to the disease.
Despite this situation, cost effective action is possible and can reverse this trend. There is a distinct need for sustaining initiatives, such as the two case studies described above, and for scaling up such activities in order to reach other affected communities.
Advocacy work is also particularly needed for awareness raising. It is essential, not only for prevention purposes, but also to promote individual and community level understanding of the disease so that it becomes possible for people with HIV/AIDS to actively participate in society and not be forced to die on the margins.

Bibliography

1. Uganda Participatory poverty Assessment Process: Kalangala District Report. January 2000.
2. Cathi Albertyn. Using rights and the law to reduce women’s vulnerability to HIV/AIDS June 2000
3. Peter Gordon and Kate Crehan. UNDP HIV and Development Programme Dying of sadness: gender, sexual violence and the HIV epidemic.
4. Robert Page: Stigma; Concepts in Social Policy Two , 1984
5. Noerine Kaleeba et al. Open secret; People facing up to HIV/AIDS in Uganda. July 2000
6. Kando. “Passing and stigma management: the case of the transsexual” in Bryant CD (ed) Sexual Deviancy in social context. New York.
7. Cumming and Cumming E. “On the stigma of mental illness” in Palmers & Linsky AS (eds) Rebellion and Retreat. Columbus; Ohio, CE Mervil 1972
8. Mugisha Odrek Rwaboogo: Uganda districts information handbook 1998

The work in communities discussed in this paper, and the writing of the paper is supported financially and technically, by ActionAid in Uganda.

ActionAid Uganda, Strategies For Action Programme, (SFA), P.O. Box 676 Kampala Tel: 00 256 41 267738

Email: admin@actionaiduganda.org