The anti-vaxxers who came in from the cold

The first vaccine is always the hardest. 

Before she took her baby son to the clinic to get his routine two-month shots, Anita Emly, 34, cried through the night. For several years, she had immersed herself in pseudoscience and anti-vaccine propaganda, filled with horror stories of autism, paralysis and death. Terrified by what she had read, she began to refuse vaccinations for her children. 

Emly gave birth to her son in February 2020, shortly before the coronavirus started to tear through her home city of New York. In response to the chaos around her, she did something remarkable: she changed her mind.

Growing up in Astoria, Queens, Emly’s family were sometimes distrustful of doctors. She described how her father, a first-generation Indian immigrant, preferred to save western medicine for emergencies. “He would kind of laugh, like, ‘Haha, Tylenol,’” she said, explaining that he preferred to use ginger, cloves and herbal teas for everyday complaints. 

Emly is a carer for several older relatives and often saw them experience unforeseen side-effects after taking prescribed medication. She believed that doctors had not warned them that adverse reactions were possible. That left her feeling blindsided. “It was never communicated to us that these events could happen,” she said. 

When she got pregnant with her eldest daughter in 2016, Emly began reading up on vaccines. She sought advice from family and friends, looked for alternative medical sources online and read a book by Dr Robert Sears. 

Sears advises readers to follow an “alternative schedule” of only taking some shots and delaying others — an approach popular in certain pseudoscience circles. The controversial pediatrician has said that he is not anti-vaccine, but is simply setting out “both sides of the story.” In 2016, California’s medical board accused him of gross negligence for writing invalid vaccine exemptions and, in 2018, placed him on probation. 

Emly’s doctor did not engage with her when he found out that she had refused the routine hepatitis B vaccine for her newborn daughter — he simply told her that she should take it. “He didn’t listen, he didn’t ask why,” she said. “He wasn’t wrong, but he just didn’t have the best bedside manner. And that matters.” That experience left Emly feeling even more resistant and laid the groundwork for her to reject vaccines altogether. 

“I was just scared, so inaction became my choice,” she said.

For people like Emly, every decision to ignore the enormous body of evidence that vaccines are safe and effective makes it increasingly difficult to turn back towards accepted science. 

According to the researcher and vaccine advocate David Robert Grimes, “It’s hard to leave these communities because they have a social aspect to them, a sense of belonging. When you have people who are very, very far down that rabbit hole, it’s very difficult to get out. They have to give up their entire worldview.”

But that is precisely what some of them do.

In early 2020, Emly’s family went through a terrible trauma. A close friend died of flu at just 28 years old. She had not been vaccinated. As the coronavirus hit New York, Emly saw more people in her community lose their lives. Neighborhood hospitals were full to bursting, trucks carrying corpses standing outside. Meanwhile, on Facebook, anti-vaxxers began to campaign against coronavirus restrictions. 

“It really hit home,” she said. “It made me run from the anti-vax movement.”

Initial doubts

In 2008, Facebook’s enormous anti-vaccine groups were not yet established. When Lydia Greene’s daughter began crying excessively after receiving her first routine shots, she turned to parenting message boards, including Mothering Forum and the Babycenter.

“She had a very… what I felt was a scary reaction,” said Greene, 39, whose last name has been changed. When she called the nurse, she was told that she was being a jumpy first-time mom. “I felt brushed off, kind of dumb, embarrassed and worried.” 

Greene, who lives in Alberta, Canada, said that the forums “gave me an answer.” Users falsely informed her that her daughter may have contracted encephalitis, an inflammation of the brain, and that the next shot could kill her. Though Greene wasn’t entirely convinced, she was sufficiently swayed to not vaccinate her again. 

“That’s how I fell into it. And I stayed there for years,” she said. Over the next decade, Greene became more deeply involved in the online anti-vaccine community. Along with some 200,000 others, she joined conspiracy theorist Larry Cook’s Facebook group and followed the influential anti-vaccination activists Sherri Tenpenny and Del Bigtree. 

“Nothing is more primal than the desire to protect your child,” she said. “It’s pretty easy for people to hack that and profit.” 

Online anti-vaccine propaganda exposed Greene to cherry-picked segments of studies and false information. Though she had worked as a quality-control chemist in a pharmaceutical plant for several years, she began to subscribe to views that Big Pharma was “trying to cover up something” about vaccines.

Turning point

However, it was a sprawling, global conspiracy theory that finally helped Greene renounce her views. As the QAnon movement spread across the world during the presidency of Donald Trump, she started to see increasingly extreme theories in her online groups. Some linked vaccines to Satanism, deep state plots and the idea that the earth is flat. Larry Cook recently began to proclaim that vaccines are part of a “global plan to enslave humanity” and “literally slaughter the population.” Rather than drawing her further in, this torrent of false information made her think again.

“It just seemed to get more ridiculous, and I had to either dig in further, and stay with them, or start questioning myself,” she said. 

The most painful moment of reckoning came when Greene began to question the pervasive falsehood that the measles, mumps and rubella vaccine is linked to autism. Popularized by Andrew Wakefield, a disgraced former doctor from the U.K., it is one of the most deeply held beliefs among anti-vaxxers. 

Greene described how Wakefield’s discredited theory blinded her to a reality that was right in front of her: that her own unvaccinated son was autistic. She was convinced that he couldn’t possibly have autism, because he had never received the MMR shot. His diagnosis helped to shatter the worldview that she had built for herself and her family.

“I was so wrapped up in this movement, I couldn’t see my own kid,” she said. 

For 36-year-old Veronika Fitzgerald — a mother of two based in Perth, Western Australia — a New Age upbringing paved the way towards anti-vaccine ideology. During her childhood, her father collected books about UFOs, while her mother had a keen interest in mysticism. Fitzgerald was intrigued. As a teenager, she was seduced by the idea that 9/11 was an inside job and captivated by theories about the lost city of Atlantis.

When she had her first daughter, now seven, she decided on an alternative approach to parenting, choosing a home birth with a doula because she didn’t trust the hospital system, doing yoga and belly dance classes to prepare. She then met a friend who told her that she wasn’t going to vaccinate her baby. Fitzgerald started to research the subject and decided not to vaccinate either. 

That decision pushed her away from her local mothers’ groups. ”I didn’t want to belong in the mainstream groups because I felt I couldn’t speak openly anymore. I was always the black sheep that didn’t vaccinate.” 

As she slipped deeper into the anti-vaccine community, she became increasingly alienated from other parents, and medical professionals were visibly shocked by her beliefs. Then, one doctor, from India, described how children still died of polio in her country. That was when she began to rethink. 

“I hadn’t considered that my decision to not do something might impact someone who’s actually quite vulnerable,” she said. 

After losing two family members in Slovakia to Covid-19, Fitzgerald began to back away from the movement. “The number of times I heard that Covid was just the flu — it made me really sad,” she said. At the same time, doctors, friends, and family members made an effort to explain the importance of vaccines to her. She credits her brother with helping her to repair her relationship with accepted science and journalism. 

“I had to relearn which sources and which media to read,” she explained. 

Cast out

Slowly, all three women began to inch away from their fears and towards getting their children fully vaccinated. 

Emly and Greene have both had their coronavirus shots, while Fitzgerald plans to get hers as soon as she is eligible. 

These are not easy decisions to make. “It’s almost like leaving a cult, and you’re about to do something that your religion frowned upon for the first time,” said Greene. “You’re still wondering secretly, is God watching? Is my soul going to hell? What If I’m wrong and I kill my kid?”

I know that the #antivaxxers tell me that a real antivaxxer will not change their mind, but our support group is growing a little bit everyday with people that were exactly like @HeatherBSimpson and I. People want out, and we will welcome them and give them a soft place to land.

— Lydia Greene, Crunchy Apostate. (@FormerAntivax) May 4, 2021

“It’s a bit like deradicalization,” said Daniel Jolley, a social psychologist at the University of Northumbria. “People are drawn to conspiracy theories when they feel anxious and disempowered. Maybe when we communicate about these issues, we can try and include language that isn’t going to threaten or provoke people.” 

For Emly, the hardest part is facing the fact that she had placed her own child at risk — “that I had actually endangered my daughter. I’m tearing up right now. That was painful,” she said. 

Greene now runs a Facebook group titled “Back to the Vax”. At just 35 members, it is a fraction of the size of the anti-vax supergroups she used to be part of, but it provides a valuable community for people from all over the world, all at different stages of their recovery. 

“A lot of them have lost their community,” said Greene. “It’s like a breath of fresh air to put it all out there and just say, ‘I made a mistake.’” – Rappler.com

Isobel Cockerell is a reporter with Coda Story.

This article has been republished from Coda Story with permission.