HIV and AIDS: The Global Inter-Connection

THERE ARE LESSONS TO BE LEARNED

By Theresa J. Kaijage

HIV has taught African communities a few lessons, the most important one being that they must raise a unified voice and stand up for themselves because no one else will do that for them. Communities have become aware of the need to supplement government efforts to promote HIV intervention efforts at the grass-roots level, and as a result, HIV service organizations have begun forming. Some of these organizations are comprised of people who are infected with the virus, while others include their families as well.

TASO, The AIDS Support Organization of Uganda, under the leadership of Noerine Kaleeba, has taken a lead in HIV support in sub-Saharan Africa. Their counselling services provide relief for many infected persons who are living positively with the virus. Similar efforts are emerging in Kenya, Zambia, Zimbabwe, and other countries in the region.

In Tanzania, WAMATA, a Swahili acronym for People's Groups Fighting Against AIDS in Tanzania, brings families together for mutual support, care and counselling. When WAMATA was founded in June 1989, it was created as a desperate attempt to intervene in a critical situation. Today, whenever possible, we provide economic support in addition to the counselling and social services.

During the last few years, the organization has adapted to the process of engaging in family intervention. First, WAMATA counselors have learned that it is preferable and more productive to engage both partners in counselling before one of them dies. This helps the patients to resolve their anger and various existing conflicts as it prepares them for the difficult task of preserving the rest of the nuclear and extended family. Facilitating the family and the community's process of coping with a member who has contracted HIV can be a challenge, but it is important to adequately prepare people for the situation.

However, the ideal situation of intervening before one partner dies rarely presents itself, so counselors are usually in the position of helping the surviving partner to mourn and prepare for his or her own impending death. They also must address the needs of other family members because often it is through the surviving spouse or partner that a family first learns of HIV within their midst.

WAMATA members have learned the importance of linking care of soon-to-be parentless children to patient care so as to support the children during the terminal stages of their parents' lives, and to prepare them for a different life. This gives the biological parents an opportunity to stimulate their children's bonding with parental substitutes, and it encourages that bonding and mutual trust to develop before both parents die.

The person living with HIV should also be encouraged to develop a positive attitude toward living, even if life may seem difficult. Some individuals may wish to enter into a legal union with a partner whom they can rely on for support as they confront the disease. Family members, legal counsel and religious institutions may be brought in to execute the couple's decisions. Counselling at this stage may involve exploring available alternatives for preventing HIV transmission to an uninfected partner.

WAMATA has come to appreciate the value of linking preventive services to supportive care and counselling because it is through the latter that individual contexts of behaviour and behavioural adaptations can be addressed. Mass education is important, but it is not an end in itself. Socially learned behaviours are acquired over a long period of time and relinquishing them is also a gradual process. This may require various types of assistance, the identification of which usually occurs in counselling. Learning and sustaining new behaviours may also warrant professional support. A relapse in HIV-preventive behaviours is different from a relapse in other chronic problems. With alcoholism, for example, chances for regained sobriety still exist after a relapse as long as therapy is assured. But a relapse into unsafe sexual activity could lead to infection with HIV which is incurable. I am always hopeful that people, once they see an example, do even better in taking their lives into their own hands and shaping their destiny.

It is difficult to single out HIV as one problem rather than part of a complex set of problems. Since the arrival of HIV it has become more apparent that those living in the developed countries may benefit from an identification with their counterparts in the developing countries. One way to do so would be to join us in our struggle not only against HIV, but also against conditions of poverty which enable the disease to thrive. Greater intergovernmental and interagency collaboration is needed if we are to overcome this epidemic.

Development assistance of today is policy-oriented and some of the policies are laden with postcolonial power imbalances. The issue of partnership between North and South must be addressed if we are to avoid reinforcing the status quo. Neither the donor nor the recipient of development aid would gain from more of the same. Currently we are seeing the re-routing of development assistance through NGOs instead of through governments. One of the reasons given for this is the avoidance of government bureaucracy. I believe that the North also prefers to fund NGOs because they require less funding. Moreover, while bypassing governments, northern funding sources demand the same types of bureaucratic structure from grass-roots NGOs. The result is that NGOs in developing countries are competing for scant resources, yet a high demand is placed on them in terms of managerial ability, financial accountability, and proposal writing.

In the long run, this could lead to funders sending their own staff to direct programmes in developing countries. Are grass-roots NGOs capable of managing themselves? Or will they only be funded if donors send their staff to oversee operations? If the latter is the case, a good percentage of donor funds will go toward sustaining their own personnel at much greater cost than local employees. Conceptually, this scenario is fine if the outside staff is sensitive and empowers the organization so that shortly the local staff can operate without outside supervision. But usually this is not the case. Once the recipient organization's personnel becomes dependent upon an outsider's instructions, they do not develop their own skills or the confidence to make mistakes and learn from them. Whether outside management can create sustainable development remains to be seen.

There are communities in which everybody knows everybody and shares some form of identity with everybody in the network of relationships based either on kinship or good neighborliness between villages which comprise community settlements. If we extend this good neighborliness to the global community we may find some way in which we can identify with them and join them in their struggles. Not only against HIV but also against their conditions of poverty caused by the global economic inequalities on which HIV seems to be thriving. Development assistance programmes, if grafted onto such inequalities, will only succeed in reinforcing the established status quo which is the very cause of uneven development at micro and macro levels.

To limit the waste of resources, especially time which is absorbed by administrative functions, we should all collabourate on alternative methods. For example, at the donor level there could be a clearinghouse for funding agencies to share funds among NGOs rather than encouraging competition. NGOs and national education and prevention programmes should share tasks and information which link them beyond national borders.

It is very difficult to meet the needs of donors and simultaneously justify the needs of the recipient when providing services to the client population. For example, there is pressure from all quarters to emphasize the role of survivors, particularly parentless children, rather than caring for the ill. Yet in my community, it is in the interest of survivors to take care of the sick and infirm. You cannot separate the two functions, and therefore we must link the care of our ill with the care of the grieving. The costs incurred in helping a person to live positively with the virus is nothing compared with what that person gives back to the family and communities for the remaining part of his or her life.

HIV knows no boundaries. All people are equal in front of the virus. Those of us who exist on the margins of society are more vulnerable, and when the stigma of HIV is added to the stigma of poverty, they suffer a double disadvantage. However, we must act quickly to take advantage of the epidemic to advocate for change now that HIV has given us common ground.

Equal partnership and mutual support ought to be the guiding principle in all human relationships. Only full realization of the give-and-take in our interactions will promote recognition of the value of each person's contribution to the global community of nations.

Biographical note

Theresa Kaijage is the founder of WAMATA, a Tanzanian advocacy and counselling group for people infected with HIV.