Gideon Byamugisha is a priest in the Anglican Church of Uganda. His public witness of support and compassion for all people living with HIV/AIDS has helped to shape the global church’s best responses to the epidemic.
Gideon found out he was HIV positive in April 1991, soon after his wife became ill. His colleagues were largely supportive but pleaded with Gideon to keep his infection a secret. He refused, becoming the first known religious leader in Africa to publicly declare his HIV-positive status.
It took a decade for Gideon’s singular decision to grow into a broader response, but in 2002, forty-two other religious leaders added their voices to his to found INERELA+: the International Network of Religious Leaders Living with or Personally Affected by HIV/AIDS. Those voices number in the thousands today and represent a powerful social movement to replace stigma and discrimination with compassion and comprehensive education.
In an interview conducted with IHP’s Dr. Blevins, Gideon offers insights into the kinds of theological perspectives and religious practices that can offer compassionate care to people living with HIV.
Q: What is your advice on reaching key populations without being seen as trying to interfere with religious and cultural beliefs? It seems like a delicate dance.
GB: We need to re-conceptualize the meaning of “Most At-Risk” by redefining the key populations and framing the concepts in a way that fits into the paradigm of moral systems & religious engagement. For example, public health researchers put up a slide showing the key populations: 1. CSW, 2. MSM, etc. But in the religious leaders’ minds, they are saying “We told you. We told you that these are the behaviors that put people at risk.” Now the presenter falls into a ditch, where the presentation causes further alienation. “They need to come to the Lord; they need to change their behavior!” So we’re no longer talking about assisting the key populations, but about blaming the key population.
We need to change the language — to redefine those who are most at risk without alienating them. Those most at risk are:
- Those people who lack accurate information on how HIV spreads.
- Those people who are fatalistic or pessimistic on HIV – their attitude makes them vulnerable.
- Those who lack appropriate skills for protection: condom skills, can’t advocate for themselves, want to say no, but say yes.
- Those who lack services – accessible, non-stigmatizing services For example, they want counseling, but it’s patronizing so they don’t come back. They need ARVs, but they can’t get them because of attitudes in the government.
- Those who lack supporting environments — places that make safe behavior common and routine.
Q: In public health, epidemiologists look at behaviors and give names like MSM, focusing on the behavior and not the person. But this term can stigmatize. How do we describe the things that people in key populations need without contributing to such stigma?
GB: Name the risk, not the behavior. For example, it is not the behavior of MSM or CSW that puts them at risk. It is the failure to take precautions. Many MSM and CSW do not know what to do to prevent transmission regardless of their behaviors. But we keep focusing on the behaviors themselves. We further stigmatize people by doing this.
In Uganda, there was a time when mutually monogamous relationships had highest rate of HIV, while CSWs had much lower risk. In Uganda, some CSWs learned that if they get HIV, they were out of business. So there was an incentive for them to use protection so they charge $50 for condom or $200 for no condom. It comes down to creating environments where there are supports for people to minimize their risk.
Q: What are the opportunities and challenges involved in getting FBOs to adopt the perspective you’re describing?
GB: I really do believe that most faith leaders are eager to engage whenever the conceptualization of the problem changes. INERELA+ has pioneered a language that makes sense to religious leaders. We don’t spend time giving prescriptions for preventing HIV (the ABC approach). Instead, we spend time trying to discover what messages reach faith leaders. What makes a leader’s heart change so that they’re more willing to help those who are at risk? If you focus on what people at risk need to do in order to prevent themselves, then the religious leaders wash their hands and say, “See, we told them to change behavior, but they won’t.” But if we re-frame it, we can reduce stigma and shame, stop blocking access to treatment and testing.
Q: Religious traditions bring stories and language to the table, too. We can begin to engage in a theological conversation. As a Christian religious leader, you can remind Christians that the person they meet is a child of God. And so, we don’t have to agree 100% with someone else, but one of the commitments that we have for another human being is that we don’t allow harm to come to them if I have a way to stop it. Aren’t those theological positions a specific resource that religious traditions can contribute?
GB: Every religious tradition has compassion, care, justice, but we are looking at issues where those theological commitments get blocked. How can a Christian parliamentarian believe we are created in the image of God, but then go into parliament in Uganda, and support a bill to kill the gays? The theology is okay, but then what is it that makes people overlook doing the good they know?
We have data from behavioral scientists, biomedical researchers, but we don’t have a lot of data that is looking at what is the belief that makes people of faith do less than they are supposed to do in this whole effort of reducing stigma and shame and denial and discrimination around action and inaction of AIDS.
We need to focus on Faith Based Communities operating in most at-risk communities. Can we combine key populations with these key communities? The Western notion emphasizes the individual member of a key population, but in an African interpretation of the world the emphasis is on the community. When we say the individual is at risk, the African says, “What has the individual done that the community doesn’t want them to do?” But if we frame it as community, then the religious leader has to say, “Oh! I’m part of the problem!” Now he thinks twice.
Q: Can you talk more about this “individuals-at-risk vs. communities-at-risk, US vs THEM. How do we move beyond this dichotomy and put us all in the same boat. Many CSWs and MSMs are going to be at the church or mosque, so they are not “others” to our religious communities – they are part of the religious communities. How do we hear their voices?
GB: Who has power and who is outside of power? There is a tendency for the majority to always suppress minority groups and scapegoat them. Minorities have to work to reorganize themselves. The voices of CSWs, MSM, PWID need to be heard. What is still lacking from those voices is the community element – they need to be organized not only as individuals but as supportive communities.
In Uganda, I have seen a group called SMUG (Sexual Minorities of Uganda) but I have never heard a parent say “We are lining up for support of our children.” I haven’t heard from religious leaders, “The people who you are calling IDUs or MSM, they are in my community, in my church, in my mosque.” People at risk need to be organized and need to fight for it.