It’s not misinformation. It’s faith.

Embedding with an anti-vaccination group on WhatsApp

I first met the anti-vaxxers in the spring of last year, at the height of the measles outbreak. It was just after sunrise, in the dim light of Jamaica Station in Queens, New York, where we had arranged to meet a bus to Albany. As we waited, in the glow of the brake lights on Sutphin Boulevard, freezing rain beaded red on the station’s glass walls. Most of the women were meeting in person for the first time. But they knew each other well from endless conversations on an anti-vaccination group on WhatsApp.

WhatsApp, more than most other technological platforms, illustrates an uncomfortable truth for journalists: we all have our own informational realities now. MSNBC viewers live in a separate world from Fox News viewers and a different one again from readers of the Financial Times. I wanted to explore how those realities work, and how they are likely to develop. The ways they undermine, and even replace, reporting. An issue as sensitive, and as prone to misinformation, as vaccination seemed a good place to begin. I had followed the anti-vaxxers’ conversation since the measles outbreak reached a crisis point in March.

In the days ahead of the trip upstate, my phone had been buzzing with WhatsApp alerts. There was mostly an overwhelming rush of links, often to YouTube videos and court documents, many related to the measles vaccine. A study on gene mutation and the rise of autism; data on vaccine preservatives and mercury levels in infants; something known as the Stanley Plotkin deposition, in which an American physician testified that he used cells from seventy-six human fetuses in the development of vaccines. Pieces of mainstream journalism were shared either when they supported the anti-vax view, or in order to skewer them. 

Finally, the bus arrived. “We’re like the Underground Railroad,” a mother said as we climbed on. “It’s so nice to be with like-minded people. It’s very reassuring.” I knew from WhatsApp that those who boarded at a stop in eastern Long Island caught the bus at 3am. Many of the seats were already occupied by sleepers crumpled under coats, their faces pale and still. 

Though the United States declared the measles virus eliminated in 2000, an outbreak last year had caused almost a thousand US cases by the morning of our trip. More than half of those cases were in Orthodox Jewish areas. Most reports blamed the epidemic on those communities. “Patient Zero,” they said, had been a traveler from Israel visiting Orthodox neighborhoods in Brooklyn and Michigan. 

The anti-vaxxers were traveling that morning to protest New York State Senate Bill 2994, which had been drafted in response to the outbreak. It aimed to repeal a public health law that allowed religious exemptions from vaccines. Our bus turned north into the bands of rain, onward to Albany, where the group would lobby State Assembly members to vote against the bill. Some had prepared signs: “Parents call the shots. I do not consent!” and “If there is a risk, there must be a choice!” “Vaccines are the devil’s work.” 

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Four hours north, as we stood on line outside the New York State Capitol, Christian homesteaders and parents who favor unvaccinated schools chatted with teams of Jewish activists in matching T-shirts. I fell in with a group of mothers and grandmothers, all Orthodox Jews. “Did you have measles when you were a child?” one asked me. “Yes.” “And? How are you?” Her laughter was light and kind. 

The women fell into an easy patter. It was chilly, and we puffed the damp air as our fingertips turned numb. “Who’s your obstetrician, is he in the city?” “Did you hear about the baby boy last week? The pediatrician said he wouldn’t have survived the stress of a hospital birth.” “How many kids do you have?” “Seven. And they’ve all had the measles.” More laughter. 

We entered the office of State Assemblyman Robin Schimminger. The carpet, the walls, the tables we sat around, even the very air we were breathing, seemed brown, or gray, or whatever color lies between the two. 

Female constituents crowded at the end of a long conference table closest to the door. Most wore the uniform of Orthodox modesty: black coats, long black skirts, thick beige tights. They had silk scarves over their hair, or else hats over sheitels, or wigs. Rabbis, in long black suits, black brimmed hats, and fringed gartels, or prayer belts, gathered at the far end of the same table. A tiny boy in a yarmulke and red Wellingtons moved between the two groups, then lay down on the carpet. 

Schimminger was a no-show. His aide took notes on a legal pad. A young rabbi spoke first. Two of his children had been injured by vaccines, he said—the second after a yearlong argument with the family’s pediatrician. Only now, he said, did the doctor admit that his children carried a genetic mutation that made it harder to process toxins in vaccines. Three days after the rabbi’s second child received the vaccine, he had been hospitalized with a high fever. The child faced lifelong, chronic illness. “The guilt is unbearable,” the young rabbi said. The aide scribbled. “I’m a parent,” he said. “I knew it. Why did I allow the doctor to do that to my child? We’re commanded by our Torah to protect our children.”

“Well, do you think we changed anyone’s mind?” a grandmother asked me after the meeting. There had been more than a thousand in Albany to protest the bill that day, one of the mothers said. Another guessed two thousand, but she predicted the press would underplay the turnout and fail to mention any attendees except the Orthodox Jews, “of course.” (The Wall Street Journal reported that “hundreds” had attended. The New York Times did not cover the Albany rally, but ran an Ethicist column with the headline “Can I Get My Anti-Vaxx Sister’s Kids Vaccinated?”) 

For anti-vaxxers, journalism is merely a tool of the industrial interests that seek to push vaccines whatever the cost. The mainstream media never wanted to cover this stuff, said one mother. One of “them”—a reporter—had stopped her and given her a business card. “I’m never going to contact her,” she said. “Never.”

The Orthodox women’s anti-vax WhatsApp group, by contrast, hummed with the kind of organizing momentum that more traditionally rallied around newspapers. Emails and phone numbers circulated for top targets at the Capitol, those wavering on how to vote on the bill. Alerts went out when legislators weren’t in session, so members knew to start calling. They pressed redial until they got through. Separate talking points went out for use with Democrats and Republicans. 

None of the messages contained misinformation. They just shared abundant evidence to support a worldview—that the media, big pharmaceutical companies, and the government were working in league to shove aside parents’ rights, and children’s needs, in favor of profitable drugs.  

The group was, and remains, strictly private. There are separate threads for women and men. Most of the ultra-Orthodox community would shun participants if the messages or identities of the senders were made public. 

 

Demonstrators protest New York State Senate Bill 2994 in West Capitol Park, Albany, on May 14, 2019. Photo: Amanda Darrach

 

I vaccinate my child. But I remember a cold morning when she was three and I rushed her to the pediatrician’s office. Her symptoms were nothing out of the ordinary, but I had a gut feeling something was wrong. Later that morning, my daughter tested positive for flu-B. By nightfall, she was in the emergency room with a fever of 106 and chest retractions, a symptom of serious respiratory distress. 

Like the parents at the rally, I knew all about instincts, about doubting them when they were impolite or inconvenient, about the grim loneliness of being right about terrible things. I was a first-time parent with no family nearby. I had no medical training. No desire or energy to terrify myself with studies and statistics I could not interpret on my own. Nothing except an inexplicable certainty.

In 1996, geneticists from the Boston Children’s Hospital studied blood samples from thirty-two pregnant women and from eight nonpregnant women who had given birth to males six months to twenty-seven years earlier. Nineteen of the women were pregnant with male fetuses at the time of the study, and thirteen of those women had cells with male DNA in their bloodstream. The elemental building block of their babies’ bodies had become elemental to their own.

What if we just know

 

WhatsApp is not a social network. It’s mostly messaging—text, audio, photo, or video, to individuals or groups of up to 256 members. Facebook, which owns WhatsApp, reported over 1.6 billion monthly active users last year. There are 68 million in the US alone. As of 2019 it was the third-most-downloaded app in the world. Its users send more than 65 billion text messages each day—29 million a minute. There are more than a billion WhatsApp groups. 

Messages are encrypted, most likely to protect Facebook itself from any liability for what happens on its platform. That means users can communicate entirely unpoliced, and it is very difficult to trace the source of any piece of information.

Take, for example, a post that spread across social channels in 2019. The image is a still from The Matrix. Keanu Reeves, as Neo, holds up a hand and stops dozens of bullets in midair. “I have an immune system,” reads the copy. “No vaccines needed.” If everyone in the first group shared it, the Matrix meme—created by a single user‚ unvetted, unsigned—could theoretically reach thousands of users. Two more rounds of forwards and tens of thousands of viewers—a small city’s worth—could see the meme. 

At the same time, the average group size on WhatsApp is six. It feels intimate. Group members feel that they share the same concerns and worldview—and mistrust the same institutions—even if they don’t know each other personally. Each is confirmed and supported by the others. 

When the pediatrician told me that my daughter had the flu, I was scared, but I was also, on some fundamental level, relieved that my intuition was correct. I was heartened that I wasn’t as crazy as the doctor had made me feel when I had first called that morning. I was comforted that the world seemed to match my understanding of it. 

WhatsApp mimics the way we make emotional decisions. It is settling to ride on a bus full of people who share your beliefs. It’s a relief to be right instead of mired, as good journalism must be, in endless nuances of gray. 

And the feeling persists, even if we’re later proven wrong. In a 2013 study on the effects of political misinformation, Emily Thorson, a political scientist at Syracuse University, found that even after we accept a correction intellectually, false facts still alter our attitudes. She has a name for that insidious residual impact: “belief echoes.” It doesn’t matter if we know that a rumor about someone in our community—or a political candidate, or a public health crisis—is false. It only matters that the first time we heard the rumor, it made us feel something.

WhatsApp has swept entire nations. Take Kenya. Hostility between the Kikuyu and the Luo ethnic groups is deep-seated there. In the past decade or so, more than a thousand people have died in ethnic fighting. And by the 2017 election, 88 percent of the population had access to the internet through their phones. More than half of those registered to vote were young, and active on platforms like WhatsApp. 

During the campaign, incumbent president Uhuru Kenyatta hired Cambridge Analytica, the data firm used to build momentum behind the Trumpist and Brexit movements. Soon, disinformation whipped across platforms, unchecked. The Communications Authority of Kenya accused twenty-one WhatsApp groups of disseminating misinformation and hate speech. Ten days before the polls opened, the electoral commission’s IT manager, whom Kenyans trusted to prevent tampering, was found tortured and murdered. According to Human Rights Watch, in the months following the election—which Kenyatta eventually won, despite charges of “irregularities and illegalities” on the first balloting—police and armed gangs killed at least thirty-seven people in Nairobi. 

WhatsApp is even more pervasive in India, with approximately 400 million monthly active users. That’s roughly 100 percent of all Indians who own smartphones. The numbers there doubled between 2017 and 2019—200 million new users in two years. In the midst of that explosive growth, a WhatsApp disinformation campaign preyed on communities’ fears for their children’s safety. In 2015, there were an estimated 42,000 child kidnappings in India. By 2016, that number had grown to 54,723. In the spring of 2018, rumors of child kidnappings circulated throughout the country on WhatsApp. The most persuasive material included a video of a supposed abduction, later found to have been edited from a child-safety video made in Pakistan; dozens of people were killed in lynchings for a false crime. Others have been battered for wearing their hair long, stoned for sharing chocolate with schoolchildren, or blinded and hanged from a bridge for having a mental disability.

In Brazil, the app is the primary news platform for middle- and lower-income people. In recent years, yellow fever has spread beyond the Amazon basin, where the disease is endemic, and raced south toward major cities like São Paulo and Rio de Janeiro. An urgent vaccination campaign in early 2018 worked to immunize 23 million people living directly in the path of the outbreak, but disinformation on WhatsApp had already taken hold. A widely circulated audio message, from a woman who claimed (falsely) to be a doctor, warned that the vaccine was unsafe; another WhatsApp story inaccurately linked a university student’s death to the yellow fever vaccine. Videos went viral, stating that the vaccine was created to cull the world’s population. The World Health Organization reports 1,376 human cases in the outbreak, including 483 deaths—a 35 percent mortality rate, presumably preventable by vaccination.

Journalists in those nations never stood a chance of reaching as many people as fast—and as persuasively—as WhatsApp did. 

 

Though the measles epidemic in the US seems to be over for now—by this November, there were only eight new cases nationwide—the risk of infection remains in communities with low vaccination rates. According to the Centers for Disease Control, of the 1,276 US cases reported in 2019, roughly two-thirds occurred in ultra-Orthodox towns in New York State. Ten percent of US cases ended in hospitalization, and 5 percent developed complications, including pneumonia and encephalitis. The WHO reported more than 140,000 measles deaths worldwide in 2018, most among children under five.

Ultra-Orthodox culture in the US is based on pre-industrial Europe. The rules bind communities. Women don’t drive. Most families do not have computers or televisions and read only Yiddish newspapers. The shomrim, an auxiliary police force whose members serve as security guards for ultra-Orthodox enclaves, pick and choose when to involve official police. Ultra-Orthodox children attend yeshivas, where often the only language spoken is Yiddish, and where the boys’ education in particular is limited to the study of traditional religious texts. Almost 100 percent of male students graduate yeshiva without a high school diploma. With very few exceptions, ultra-Orthodox Judaism is isolating. 

The mother of seven I met in Albany introduced me to her sister. They both live in fourth-floor apartments, in buildings next door to each other. They practiced a form of nonstop communication from a pre-WhatsApp era: they spoke through their kitchen windows all day. 

It’s no coincidence that socially isolated communities are hard for journalists and public health advocates to reach—and therefore more vulnerable to health misinformation. Researchers at the Meedan Digital Health Lab, a center that addresses health misinformation online, call the phenomenon in which online health misinformation contributes to the spread of real-world disease “misinfodemics.” In a new report, the lab found that online material purporting to provide health information can influence antibiotics and treatment regimens, responses to epidemics, access to care for serious illnesses, and vaccination rates. Misinfodemics drive epidemics of measles, Ebola, yellow fever, even tooth decay.

A vaccination doesn’t just shield the recipient from disease, it prevents those around them from exposure—usually those most likely to become seriously ill from an illness like measles. Babies aren’t vaccinated for measles until they are a year old. Patients with cancer, HIV/AIDS, or type 1 diabetes have weakened or failing immune systems and can’t be vaccinated. A small percentage of the population has serious allergies to components of vaccines. Older people’s immune systems may fail to respond strongly enough to a vaccine.  

If a sufficiently high proportion of community members have immunity to a disease—by vaccination, for example—public health officials say that there is “herd immunity.” Herd immunity is based on a social contract of sorts. Those of us who can be vaccinated agree to do so in order to protect community members who can’t. For highly contagious airborne illnesses like measles, the herd immunity threshold is 93 to 95 percent of the population. For polio, it drops to 80 to 86 percent. For Ebola, pathologists say 33 to 60 percent immunity can stop outbreaks. 

But herd immunity assumes homogeneous mixing, and the truth is anti-vaxxers tend to hang out with one another. The more isolated communities are, the more susceptible they are to falling below threshold levels. The Amish in Ohio, a Somali-American enclave in Minnesota, and Russian-language immigrants in Washington state have all suffered measles outbreaks in recent years. 

Then there’s the “free-rider problem,” in which citizens take advantage of a benefit—immunity—without paying for it themselves. Anti-vaxxers argue that their children catch measles, or whooping cough, or chicken pox, and so, although they aren’t “paying” the price for a benefit, they aren’t enjoying that benefit, either. 

But they’re not catching polio or diphtheria. And for the rest of the population, the measles vaccine is attenuated, or weakened. A milder case of measles is certainly a benefit. So is living in a country where our institutions aren’t bombarded by widespread epidemics. 

Though New York City schools had average vaccination rates during the 2018–19 measles outbreak, Williamsburg, Brooklyn, a Hasidic enclave, had one of the lowest rates of vaccine coverage among young children, ages nineteen to thirty-five months, in New York City. A 2013 measles outbreak there, with only fifty-eight reported cases, cost the city $400,000. The overarching instinct among the small but strong anti-vax community there seems to be to protect their children from vaccines for as long as is humanly possible.

 

After the rally, anti-vaxxers sent prayers on WhatsApp, and shared links to articles and YouTube videos—a lecture arguing that the US government conspired to fake the polio epidemic of the forties and fifties, an interview with a microbiologist who worked on fighting polio and described tumors “popping up out of these hamsters” that had been exposed to the vaccine. 

But in June, the New York State Assembly passed SB 2994, striking down religious exemptions from vaccines. As Assemblyman Nader Sayegh voted to advance the bill through committee so it could be debated on the floor, anti-vax activists wept. “God help us!” one of them cried out. As the results were announced—the bill passed by just one vote—shouts of “shame” came from the assembly gallery. Unable to stop the screaming, the chamber recessed. 

On the WhatsApp group, anti-vaxxers mused wearily about what the next disease du jour would be for the mainstream media. Members watched CDC meetings online to keep track. 

Soon they turned their attention to the flu shot. “The CDC has a marketing budget to put that on the news this time of year,” a mother said. “RSV”—respiratory syncytial virus—“is running rampant in our community,” said another. “Not sure if it’s lowered immune systems from kids having too many vaccines, or from overuse of antibiotics.” “The HPV vaccine is a good moneymaker, even though it only decreases probability of HPV by like three percent in people with less than three lifetime partners, so I doubt they’ll pass that one up.” Days after that exchange, Senate Bill 298B was introduced—legislation that would require all seventh graders to be immunized for HPV in order to attend school.

Last month, word of the coronavirus outbreak hit. The anti-vax community feared that the threat of infection would be used as a tool by the media to frame a “virus/panic vs. government/savior” narrative. The messages flew back and forth among the anti-vax WhatsApp group. “There is a facility where they were doing experiments on a coronavirus patient within 3 miles of the market ground zero.” “There are several coronavirus vaccines they probably just have to tweak, but, in fact, it’s better for them not to have so they can pass mandates while people are being sensationalized and scared.” 

There have been no confirmed journalistic reports of the existence of such a facility. Which is evidence, to the members of the anti-vax group, that it probably exists. 

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Amanda Darrach is a contributor to CJR and a visiting scholar at the University of St Andrews School of International Relations. Follow her on Twitter @thedarrach.