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Black folks are known for their cookouts, family gatherings, and functions. Sharing a meal is central to the culture — and so is talking about the latest gossip you heard from your auntie. Misinformation is like a rumor that seeps into BBQs and late-night chats. Sometimes it can be harmless, but during the COVID-19 pandemic, it became deadly.
“We know, the death consequences of the vaccine misinformation and disinformation were severe,” says Reed Tuckson, M.D., the co-founder of the Black Coalition Against COVID. “People died unnecessarily because of all the nonsense out there that caused many people to not want to get vaccinated.”
Social media, politicians, and frightening tactics all contribute to the spread of misinformation and disinformation. The difference between the two is that misinformation is false or inaccurate information unintentionally spread as fact, while disinformation is the deliberate spread of false information with the intent to mislead.
Tuckson’s coalition was formed during the pandemic when a plethora of misinformation and disinformation was spread about COVID-19 and its impact on Black lives. He says a couple of things became painstakingly clear: often the misinformation and disinformation about vaccines and the inaccurate perceptions of the consequences it was spread within the community.
But, outside forces played a role too.
“We tried to help the community be aware that we are being, in the Black community, deliberately targeted by the Russian bots, the Chinese through their nefarious efforts,” he says. “The Proud Boys and organized racists are also involved in it. And some of our celebrities were also doing it during the pandemic.”
Accurate health information gives people power over their health decisions and the outcomes that follow. However, the danger of believing health misinformation and disinformation can lead to misdiagnoses, undiagnosed illnesses, or death. Which is exactly what happened during the height of COVID-19.
The “politics of COVID” overwhelmed all Americans, Tuckson says. But the distrust heightened and caused many Black folks to lose faith in physicians and scientists. Even the idea of giving the Black community enough information to save its own life became a “woke activity” that was condemned and made to seem suspicious.
Medical Racism, A Perfect Breeding Ground
The truth is the Black community was a perfect breeding ground for COVID-19 misinformation and disinformation. With centuries of medical racism, experiments on Black bodies, and medical mistreatment, Black folks have many reasons to feel apprehensive about the healthcare system. But avoiding the healthcare system doesn’t make our community any healthier — or keep us from dying.
One common example of medical racism brought up by many physicians interviewed by Word In Black was the Tuskegee Experiment — officially known as the Tuskegee Study of Untreated Syphilis in the Negro Male. Part of the discourse among Black folks and the apprehension around the COVID-19 vaccine was due to the 1932-40s study. Hundreds of men with untreated syphilis were told by researchers they were being treated for bad blood, meanwhile, they were not being treated for the disease that was slowly killing them.
But, one of the details that seem to commonly get missed when the experiment is discussed online is why the experiment was so deadly. Tuckson says people often forget researchers denied Black people access to the drug that would have saved their lives.
“There are a lot of people that wanted to use Tuskegee as a reason to not get vaccinated (for COVID-19),” he says. “We now translate that in modern times as ‘because of Tuskegee, I will deliberately deny myself the drug that will save my life’. It makes no sense. We have to check our biases.”
Beyond the bias, comes fear. Brittney Smith, senior manager of education partnerships at the News Literacy Project says misinformation thrives during a pandemic. When COVID-19 first started, people were understandably terrified.
“When we have uncertainty, and when people are afraid and looking for answers, misinformation tends to kind of surge,” she says. “Often misinformation provides security for people. It gives them the reassurance that they’re looking for.”
For example, folks were bombarded with misinformation, like drinking bleach and taking horse tranquilizers as a treatment for COVID-19. Each of these treatments proved incorrect, and Americans who fell victim to this misinformation experienced a range of adverse health effects.
And for the Black community, history has only exacerbated the disconnect between accurate information and misinformation. Black folks have been the target of terrible practices, research, drug development, and medical care, Smith says.
“We have to recognize the Black community is especially susceptible to medical exploitation, high costs of health care, lack of access to medical facilities, and medical practitioners. This kind of leaves Black people in a position of vulnerability,” she says. “Science in general is something that many Black people don’t seem to trust.”
Beyond the Narrative of Historical Mistrust
Vaccine-related narratives in the Black community during COVID-19 were nuanced and complex. While mistrust played a critical role, it’s crucial to look beyond the singular narrative of mistrust.
In a 2021 report by First Draft News, researchers examined the conspiracies started in non-Black communities that were essentially planted in Black spaces, and the different narratives within the Black community.
One of the theories that started in non-Black spaces was that the COVID-19 vaccine impacted women’s reproductive health. On the other hand, within Black spaces, ideas started circulating that Black people would receive a weaker vaccine in comparison to non-Black folks.
“Vaccine hesitancy in Black communities isn’t explained away by vaccine inequity. The reality is that there are Black people who are hesitant to take the vaccine and there are Black people who can’t get vaccinated because of a lack of resources in their communities,” the report states. “The idea that Black communities only experience vaccine hesitancy because of histories of medical mistrust and malpractice is another example of reducing complex issues to overly simple explanations.”
This report highlights some of the discourse specifically found on social media spaces between November 2020 to June 2021. But much of the oversimplification of how Black folks feel about vaccines in general and the healthcare system persists today.
You Can’t Separate Misinformation From Social Media
The role social media played in the pandemic, and how it continues to influence folks’ health decisions is a layered discussion. While it helped connect folks with COVID-19 resources like vaccination centers and food drives, it also became a catch-all for divisive tactics.
A 2021 report by the Pew Research Center found that 72% of Americans use some type of social media. The survey conducted between 2005-2021 reports 77% of Black folks and 80% of Hispanic people use at least one social media site.
The way social media algorithms are designed makes it easy for someone seeking information to go down a rabbit hole. Tuckson says oftentimes, people get trapped in one door that leads to another, even leading them into conspiracy theories.
“People are often not aware that they’re being exposed to things that are not true. And because people are not taught to be good consumers of information, it is very easy to fall prey to these things,” he says.
It’s not enough to know where misinformation and disinformation are found. We have to proactively work to provide accurate information. And more and more Americans are in favor of restrictions on false information and violent content online.
A July 2023 Pew Research Center study found 65% of Americans support tech companies restricting false information online and 55% of Americans support the U.S. government taking these measures, with rates of Americans in support jumping 16% in a five-year period.
How Misinformation Impacted Black Folks’ Health During COVID-19
Melissa Clarke, an emergency medicine physician, says misinformation is also spread on a one-on-one level — like over the dinner table, at church, and between coworkers at the water cooler. Although misinformation has circulated in different spaces for decades, she says the pandemic was an accelerant.
“We actually call it an infodemic,” Clarke says. “Anytime there is a pandemic or epidemic … people are often scared. They’re often mistrustful because situations are changing around them so fast and they’re clutching onto any piece of information that seems to solidify what they already believe.”
In the emergency department, Clarke primarily saw patients that were Black or people of color. Some of the common concerns she heard from patients were about the utility of masks, the necessity of social distancing, and the role of vaccines. In 2017, she founded the Be Health Empowered group, a health literacy company that helps combat misinformation and empower people with evidence-based health information.
But data shows Black folks and people of color suffered some of the worst health outcomes of the virus — Clarke says health misinformation played a huge role in that. According to an ongoing analysis by the AMP Research Lab, Indigenous, Black, and Pacific Islander communities had some of the highest cumulative crude death rates in the U.S., as of June 2023.
When the vaccine initially became available in late 2020, access contributed to who could get the shot. It wasn’t just about being misinformed. Pre-existing challenges like inequitable housing, working on the frontlines, and disabilities made Black folks more susceptible to the virus but created additional challenges in accessing the vaccine.
The Black Coalition Against COVID is one of many organizations that came together to educate, dispel misinformation, and provide easier access to the vaccine. Tuckson says this only happened because of the Black community’s leadership, health care professions, faith leaders, and other folks of influence joining forces.
“Let us be very, very clear here, the Black community saved itself more than the white community saved itself from the COVID-19 pandemic,” he says. “Because we worked so hard as a community to overcome misinformation and got our community vaccinated at very high rates.”
And the data proves it. In May of 2021, there was a 10% gap between Black Americans and white Americans who were eligible for vaccine doses. And a 12% gap for those two groups for the second dose. Within five months, efforts to dispel misinformation and hesitancy around the COVID-19 vaccine show the gap significantly closed with a 1-3% gap in January 2022.
Imperative to Verify Sources
Health information, whether found online, on social media, news sites or through word of mouth can cause visceral reactions if it’s inaccurate. The experts we spoke to for this series had many pieces of advice on how Black folks can spot health misinformation and disinformation without the lens of fear.
“We tell people, the key is really to pause. Often misinformation is going to play on an element of truth,” Smith says. “When you’re reading something that gets you all emotional and you’re terrified … take a moment, take a deep breath, and begin to think about it.”
Identifying health information requires effort.
“A lot of the uncertainty around health and science has to do with vocabulary,” Smith says. But that does not mean you can’t be well-informed and educated on finding factual health sources. Word In Black compiled a short list of best practices and links to additional resources.
- Read beyond the headline. What’s in a headline is only a fraction of what the rest of the information in an article is explaining.
- Practice lateral reading. Verify the source as you are reading, click the links in the article, or do a quick search on the author.
- Are they experts? If you’re at a cookout, watching a Tik Tok, or reading a news article, is the person sharing the information an expert? Social media content creators who are relaying information do not hold the same credibility as an expert on the topic being discussed. Good journalism means including links to credible health sources and quoting experts.
- Check the date. If you read a research paper from 2001, there may likely be an update to that research.
