Belief as Barrier
The choices we make in life are governed by our values. In health care especially, values are often shaped by cultural influences like religion. Faith is one of the more dominant lenses that the African-American community uses to view itself. Morality creates order in the face of collective trauma; for a community often seen as less than human, it provides a way to assert the value and worth that has been denied.
I knew a person with HIV who told me that God told him to stop taking his meds. Such moments are hard to endure, and little in the training of even the most effective HIV treatment educator can prepare you for the moment when someone stubbornly and sincerely says he believes God has told him to stop HIV treatment. But I think it's a mistake to condescend. The best response to faith isn't always rational. In these instances, I'm not certain that people are unaware of the consequences of their beliefs. The choice they are making, for whatever reason, appears to be best for them at that moment.
Perhaps we rely too much on facts and talking points to guide these discussions. We rattle off statistics and scientific evidence, and while that might clarify things in the realm of the rational, it doesn't offer much comfort in the realm of the emotional. In a world already uncertain due to their place in society and their health condition, people may hold onto faith in order to carry on. And though the consequences of their faith might be misguided, the need for it is not.
Faith offers clarity, order, peace, and, most critically, meaning. It connects us to the world and gives us the will to confront the mysteries of life and the ability to find joy even in the midst of suffering. This is what sermons are based on, gospel songs are written about, and the faith tradition of African Americans is rooted in. So to respond to the unshakable and stunning faith of black people, and the worldview that inspired it and the actions that stem from it, we must value the emotional, the irrational, the mysterious, and the unexplainable. It's not enough for HIV advocates to provide facts; we must inspire meaning. The message shouldn't just be tweaked, but repackaged. Certainly we must provide objective, scientific information. But perhaps there can be new ways to think about faith, to present AIDS not merely in the realm of science and public health, but also as part of a larger story.
HIV conspiracy theories are another challenging ideological bump. "Big Pharma" is seen as profit driven and even responsible for the spread of HIV among African Americans. At other times the government is the culprit. Either way, suspicion creates a sense of distrust that hardens into a powerful paranoia. Such beliefs aren't always rooted in ignorance, but perhaps in trauma.
Myth conquers fact because myth clarifies and comforts, while facts merely explain and can produce anxiety. The cold rational realities of life don't always inspire action, which is why the leaders we choose are often those who inspire rather than reveal. People, particularly those in the grip of fear, don't always want an explanation -- they want comfort. Yes, you can explain that HIV was not created in a lab, or that there isn't some huge government conspiracy, or that Magic Johnson has not been cured by some medicine being kept from us, and you will win some over with the power of truth. But for others -- those who have an affinity for conspiracy-oriented explanations -- truth is important but not always enough.
The response to conspiracy is not unlike that to faith. We must bring the facts with us, because our arsenal of scientific evidence is our most valuable tool. Facts may be inconvenient, but they are where we all eventually land. So we must also be prepared to speak to fear. People don't always remember facts, but they often remember stories, and we must share those stories with them. Stories about the impact of HIV, how different communities have responded to it, how people have grappled with it, and how it has affected African American communities, are all extremely valuable.
|The Treatment Cascade: People With HIV in the U.S.|
I've had three relatives die of AIDS, including my aunt -- two women and a male cousin who my family insisted was not gay, but rather a heroin user. Maybe the insistence upon his heterosexuality was because it was easier to have compassion for him as an IDU than as a gay man. I also continue to think about my aunt, who faced stigma fueled by race, class, and gender, until the day she died. That reality inhibited, if not prevented, her ability to seek health care. Her example sheds light on what the statistics show. She offers a case study on what we are up against.
At a recent cultural competency training in the South, ACRIA educators experienced the reality of stigma and other barriers to care first-hand. In an exercise designed to help participants discuss barriers to health care, African American participants made the following statements:
- "We were taught that white people think they're better."
- "White people get better care."
- "My family felt we couldn't trust medical providers."
- "We've been disrespected by providers."
- "We have to work harder to get the information we need from them."
- "In church, we constantly hear messages condemning homosexuals and sexually active unmarried women, so they don't get care for fear of rejection by their churches."
- "People don't go to AIDS organizations or certain clinics because they don't want to be seen walking into those places."
As long as these beliefs and feelings remain widespread among African Americans, the goal of getting all people with HIV the care they need will be difficult, if not impossible, to attain.
The Path Forward
The ACA offers perhaps the best way forward in increasing access to health care for African Americans, particularly through the expansion of Medicaid to lower income individuals. Unfortunately, the Supreme Court ruled that state implementation of Medicaid expansion is optional. Even so, full implementation of the ACA remains the most critical and promising way forward.
We must also continue to fight stigma, particularly on the institutional level. Stigma is too often framed as an amorphous thing, and this makes it difficult to address in a tangible way. We should target institutions precisely and deliberately -- churches, professional organizations, civic organizations, fraternities and sororities, social networks and affinity groups -- and create anti-stigma messaging that is precise. Our messages must integrate the norms and cultural references of specific institutions and identify gatekeepers to be ambassadors for the messaging.
A crisis mindset is not sustainable. It moves people to action, but only temporarily. It's a shot in the arm, an adrenalin rush. But it does not create the space emotionally or psychically to map out a plan, to imagine, to hope. We need to create new ways to frame HIV in African American communities. A message that acknowledges the very human desire not only to know, but also to feel, to reawaken not only the willingness to survive but also the passion to live. Most importantly, advocates, service providers, clinicians, and educators must be resilient as we work to ensure efficient systems, quality affordable health care, and culturally competent staff.
Charles Stephens is an Atlanta-based writer, activist, and co-editor of the forthcoming anthology Black Gay Genius.