Connections

Lotte Meinert, Phoebe Kajubi, and Susan Reynolds Whyte

For Robinah, the way into the treatment program that saved her life was through personal relationships: her kinship tie to her sister Joyce and her sister's link to a neighbor who was a field officer in the HBACprogram. In their accounts, Joyce and Robinah talked about how they took the steps to get tested and join a program by way of connections and with the support of other people. In principle—from a policy perspective—AIDS programs offer services to the population at large on an equal basis. But in practice, people learn about and gain access to these services through other persons. They achieve services with the help of others and are not simply caught up as individuals in a net thrown out by providers. Many people hear about testing and treatment options through various official channels and media. Yet the actual link between a program and a person is almost always mediated through a trusted social connection. Joyce had experienced her husband and children dying; she knew about HIV and AIDS. In her mind, she may have suspected an association between those losses and the symptoms she experienced. But in her telling of the story, she decided to go for an HIV test when a good colleague talked to her in private, made her reflect on her situation, and advised her to be tested. This emphasis on the sociality of decision making and action featured in most of the stories we heard about how the first generation came to take an HIV test and, in time, find a way into a treatment program. The weight given to the role of other people in helping to deal with problems was striking.

Personal relations involving proximity and reciprocity, expectation and obligation, are fundamental to getting things done in everyday life, as Patrick Chabal argues in his discussion of the politics of being and belonging in Africa. While this is true everywhere, it is especially pronounced in situations where bureaucratic institutions do not function optimally and where kinship provides a moral and practical framework for life. In this light, it is not surprising that our interlocutors talked about their movement into treatment programs in terms of connections. Yet to say that social links are important is not enough. In this first chapter, we want to examine the issue of connections more specifically and more critically. We describe the nature of the social relationships that mediated access and consider those cases in which people spoke about access as if it could be accomplished without personal mediation. Then we discuss the downside of a world in which there is so much emphasis on connections—that is, the inevitable inequities that arise because some people are better connected than others.

The analytical insight that people reach treatment through the efforts and connections of their family and friends is an old one in studies of African health care. Based on research in Zaire, John Janzen launched the notion of the therapy managing group (TMG), an alliance of kin, friends, and associates who guided a patient to one source of treatment after another in the quest for therapy among alternative possibilities. His point was that individuals did not reason completely autonomously in making decisions about treatment; rather, they were influenced and supported by people in their close networks. Janzen argued that the concept's value lay in focusing on the social process of treatment seeking. The alliance might include non-kin as well as family members, but the assumption was that all members of the network had a relatively enduring relationship to the patient.

Technical Know Who

To the concept of the TMG we add another, taken from Ugandan popular culture: the notion of "technical know who" (TKW), which refers to the widespread conviction that it is through personal contacts, and not only through knowledge (technical know-how), that things get accomplished. People and structures are activated and institutions are made to work effectively when you have a connection. When a sick person is going to a health center, concerned others will ask whether he or she knows anyone there, because everybody understands that having a link to someone who is employed at the health center—a doctor, a nurse, or even a guard or a cleaner—will make a difference in gaining access to treatment and avoiding long waiting hours. On the basis of her fieldwork in eastern Uganda, Hanne O. Mogensen writes: "I came across people who had never had the courage to turn up at a health facility. It can be difficult to find out where to start, where the line is, where to go next, who to ask, how to respond, how much to pay for what, where to get the medicine and so on. Knowing somebody—anybody—whether it is the gatekeeper or the anthropologist, may help one move in the right direction."

The usefulness of personal contacts is not limited to health care. Technical know who works in all sectors of society: to get a child admitted at one of the better schools in Uganda, it is very helpful to have connections to the school's management. People looking for work ask their friends and relatives for possibilities to connect and "fix" them in a job. The reliance on personal connections is part of the patterns of clientship and patronage that we discuss in chapter 2. But for the moment, we simply want to explore the ways people talked about getting tested and joining programs.

In strict terms, TKW deployed in relation to ART would entail being helped by a contact among the employees of a program, as Robinah was helped by Joyce's neighbor, the HBAC field officer. But knowing any health worker, even one who did not work for an ART program, was a very important kind of connection. People talked about how relatives or friends working in the health sector provided advice, suggested sources of treatment, and generally offered a kind of support that they felt was based on expert knowledge. In many cases, there was an overlap of TMG and TKW, when a health worker in the near network provided guidance or a family member or friend knew someone working in a program. The importance of the TMG and the use of TKW confirm the notion that access is mediated, whether we speak of the support and encouragement of close relatives, as Robinah received from her sister Joyce, or the contacts to health workers,...