African Mythology: Reflections on HIV and Rwanda
Last May, when I told my friends and family that I was coming to Kigali for a year to continue HIV-focused work, most responses contained the following themes:
1. HIV must be terrible there.
2. I am doing something noble/admirable/great, etc.
3. Rwanda is lucky to have me.
4. It’s dangerous over there, so I should be careful.
My loved ones were generally trying their best to be supportive and compassionate. And yet, they found themselves with some erroneous ideas stemming from pervasive narratives about Africa. These conversations gave me the chance to expand the story with a few intimate people, but also prompted me to seek a wider audience for elevating this worthy topic.
Before coming to Rwanda, I spent over five years working in the HIV sector in Washington, D.C. In the US as a whole, less than 1 percent of adults are living with HIV, compared to around 2.4 percent of adults living in D.C. In Rwanda, 2.9 percent of 15 to 49 year olds are living with HIV compared to 6 percent in Kigali. We can’t stop now if we want to end the epidemic in Rwanda and beyond, but most people are shocked that Rwanda’s figures aren’t higher.
While it’s true that Sub-Saharan Africa has been more impacted by the AIDS epidemic than any other region of the world, the impact has not been uniform and even those countries with the highest prevalence rates are experiencing some impressive successes. While I want to caution people not to make unfounded assumptions, it’s also worth telling just how profoundly the deck was stacked against Africa’s hard-won strides in the fight against HIV.
HIV progress on the African continent was crippled by the same countries who impoverished the continent through colonization, slavery, unfair trade agreements, and abusive corporate practices. Many Americans remember the days of AIDS ravaging US cities, inflicting droves of agonizing deaths. In 1996, the tide started to turn as newly discovered Highly Active Anti-Retroviral Therapy (ARVs) transformed HIV from a death sentence into a long-term manageable illness — at least for some. These medications were tragically inaccessible across sub-Saharan Africa for years to come, resulting in millions of senseless deaths. The US and Western Europe centered international discussion on economic theory and predatory debt instead of the task of urgently saving lives. Pharmaceutical companies asserted intellectual property rights to prevent generic manufacturing. The US government willfully supported pharmaceutical companies in the protection of profit over African lives until shame-based activism forced a new official position.
Beginning in 2001 in South Africa, a series of legal wins against big pharma finally began unlocking the gates of ARV access for Africa. More recently, price-gouging an HIV-related drug ignited phenomenal public outcry, perhaps signaling a shift in what the global community is willing to tolerate. Nonetheless, I still encounter well-educated people who think HIV is a death sentence, making it clear that there is still work to be done. After all, how important can access to treatment be if you believe that death is imminent?
The goal of ARV treatment is viral suppression. This means exceptionally few copies of the virus are able to live in the blood. In untreated HIV, the virus replicates and attacks the immune system, usually culminating in death due to an inability to fight infection. Viral suppression allows the immune system to stay strong while simultaneously drastically reducing the chances of HIV transmission. In the US, only about 30 percent of people living with HIV are virally suppressed compared with slightly more than 50 percent in Rwanda. This means I left home to work in a place with HIV that is better controlled in some ways. In full disclosure, much of my work has focused on so-called “key populations” with disproportionate HIV risk and infection, but the point is that Rwanda does not “need my help.”
I reasoned that my year as a Global Health Corps fellow would allow me to learn from Rwandan successes in combating HIV. Furthermore, since culture tends to shape individual thoughts patterns, cross-cultural exchanges can promote innovation. While saying it may lack humility (a core Rwandan value), I believe I also have some skills to offer in service to the collective goal of eradicating HIV in Rwanda. This is a very different framework than rescuing people who need saving, or the “White Savior Complex”, which I invite you to read a bit more about here.
Forces like racism and the White Savior Complex have harmfully shaped the power dynamics of domestic and international aid. These forces dictate who is empowered to “help” whom and what “help” looks like. Let’s recall the unbelievably horrific yet true HIV medication access legacy recounted above. I’m sure many of the white people talking about economic models instead of ARV access were lauded with praise for saving Africa even as they did just the opposite. Considering how much of our lives we spend at work, I felt like a social justice career as a social worker was the most satisfying choice I could make — and I had a choice.
Social work is constantly deepening my appreciation of how we all exist as exceptionally complex characters in interconnection. At times, I wonder if I couldn’t have “done more good” in a lucrative profession since lacking basic resources underpins so many challenges around the world. The bottom line is that we all have a role and are playing it one way or another. I’m just a person doing a job with effort and skills that can exceed, match, or as is often the case, pale in comparison to my African colleagues. As it stands, only some modicum of hindsight tells us if what we did even with the best intentions (that are sometimes absent) helped, hurt, or was useless. I like to lean into this sea of doubt in hopes that it provides at least some safeguard against the seismic harm that has been inflicted over the centuries.
The thing is, I’m actually lucky that Rwanda is having me. Cross-cultural exchange theories aside, some strategists would be justifiably skeptical of bringing in outsiders from systems with more financial resources and yet poorer outcomes. Add onto this, as a white American, I am part of a group of people who colonized, inflicted cultural hegemony, actively blocked help during the AIDS crisis, and failed to intervene during the Rwandan Genocide against the Tutsi.
I do not take for granted being allowed to legally enter, work, and enjoy life in Rwanda in spite of the historic legacy of my people. The fact that decades of foreigners working in the “developing world” hasn’t significantly improved inequalities calls into question if recipient countries are lucky at all. Inflicting whatever we think other people need is a deeply flawed approach with a strong track record of failure, and Rwanda is not having it.
One of my favorite things about working in Rwanda is witnessing the exercise of structures that set clear boundaries on international interventions. To work in Rwanda, one needs to seek approval through proper channels. This is not a place for foreigners to come and simply go forward with misguided intentions. It is amazing how challenging this can feel to some (usually white) foreigners who are used to being granted all-access passes. This is another form of white privilege.
And yet, Rwanda exemplifies managing demonstrated external threats without cutting off useful and desired aid. I do not take for granted being allowed to legally enter, work, and enjoy life in Rwanda in spite of the historic legacy of my people. The fact that decades of foreigners working in the “developing world” hasn’t significantly improved inequalities calls into question if recipient countries are lucky at all. Inflicting whatever we think other people need is a deeply flawed approach with a strong track record of failure, and Rwanda is not having it. I sometimes wonder if this thoughtful boundary-setting hasn’t contributed to staggering development successes, such as those noted here, here, or here.
So what have I learned in Rwanda about beating HIV? Government and culture are equally important factors that are nearly impossible to duplicate, especially in the US. Rwanda values community more than individuality and has a more homogenous population. Culturally, provider medication instructions are more readily followed. Also, there seems to be greater momentum for adopting health-seeking behaviors as cultural norms (for example, couples HIV testing). Additionally, there is universal health insurance and free HIV medication. The Rwandan government pays attention to research and strong central governance assures that evidence-based practices are nationally scaled up. Not everything is replicable, however much we might wish it were.
The last myth that we need to address is the idea that Rwanda is dangerous — turns out, it’s not. Just in case you think I’m an outlier on this one, you can click here, here, here, or here. Of course, crimes do occur and this is in no way intended to be insensitive to those who have experienced them, but I am much safer in Kigali than in my D.C. neighborhood. We recently marked the 100-day 23rd Commemoration period of the Genocide Against the Tutsi. I encourage everyone to learn more about this event that seems to be the first thing people think about when they hear “Rwanda,” but please don’t rely on Hotel Rwanda.
In 1994, the world abandoned Rwanda and this facilitated the death of nearly one million people. Since then, the country has become a bastion of safety and security. Widespread knowledge about life in Western Europe didn’t stop with the Holocaust, and Rwanda deserves the same dignity. It is literally the least we can do. Rwandans are proud of what they have achieved, and I highly recommend visiting to see the country for yourself. I’m not here to endorse or promote the Rwandan government, but we should give credit where it’s due, and especially where it’s long overdue. On a related note, anti-Africa travel advisories be damned. The entire African continent is not unsafe. Do your own research. These widely-trusted advisories are often grossly biased exaggerations of actual risk.
The misconceptions at the start of this piece were shaped by powerful forces. Racism is mostly about power structures, though it certainly impacts individual lives. As such, racism influences the way individuals think about the world, even those who aren’t particularly outwardly or consciously biased. Centuries of lies about the inferiority of Africa continue to run rampant. These dehumanizing stories make it easier to ignore crises such as the HIV epidemic or genocide, as well as successes and competency for self-direction. These lies are so common you probably don’t even notice them if you aren’t somehow sensitized.
Biased thoughts about Africa are apparent in the entire history of harm inflicted on Africans by outsiders, continuing to present day. Biases can be changed, but the responsibility is ours to integrate bias-countering mechanisms into systems and to work on ourselves, starting with self-awareness.
Here’s a secret: I can remember a time when I held misconceptions like these, and sometimes even catch myself with automatic thoughts that are just as biased! All the little implicit biases that research shows we all have impact our decisions, and collectively, this reinforces unjust institutions even after overtly discriminatory statutes are repealed. Biased thoughts about Africa are apparent in the entire history of harm inflicted on Africans by outsiders, continuing to present day. Biases can be changed, but the responsibility is ours to integrate bias-countering mechanisms into systems and to work on ourselves, starting with self-awareness.
If you’ve read this far and relate to the themes from the beginning of this piece, you have already taken action to balance the stories we tell ourselves. As you consider how these stories shape our actions, perhaps you might be willing to take a moment and think about another action you can take to shift the collective narrative (including your own) about these or other topics that impact the entire globalized world. The stakes are high.
Note: I am aware that implicit bias became politicized in recent US elections, and that there are serious challenges with a widely popularized instrument designed to measure implicit bias. However, this widespread but imperfect test is not the whole of implicit bias research, so I hope anyone turned off by this term pauses and considers further evidence.
Johanna Squires was a 2016–2017 Global Health Corps fellow.
