Sympathy for Anti-Vaxxers

Mistreatment by sexist doctors may help explain why so many mothers are losing trust in traditional medicine, including vaccines.

My argument in summary: The core issue driving anti-vaccination attitudes is a lack of trust, rather than a lack of knowledge. Since nearly all anti-vaxxers are women, it’s likely this lack of trust is a direct result of well-documented mistreatment of women by the medical establishment as a result of endemic sexism. These breaches of trust may explain why a sane and rational mother would come to distrust medical science, from which it is a short leap of logic to distrust vaccinations. This lack of trust is amplified by social media. By focusing on establishing renewed trust in medicine, including addressing gender bias in the medical field, it may be possible to reduce the number of mothers driven away from traditional medicine and, hopefully, get more kids vaccinated.

Vaccinations are safe. The most common vaccines have been given to hundreds of millions of people and are known to be benign.

Why, then, are so many parents refusing to vaccinate their children? Data shows vaccination rates of refusal are increasing, contributing to recent outbreaks of preventable infectious diseases such as measles. Kids are suffering as a result.

Children suffering for no reason tends to make people angry, and I’m no exception. It’s easy to accuse these parents of being stupid, ignorant, crazy, and uncaring towards their children. Righteous anger can feel good. I’m guilty of this, many times over.

How accurate are those explanations, though? The reality is most parents do want the best for their kids. Very few people are actually crazy. The information on vaccines is so common and easy-to-understand that it isn’t sensible to chalk it all up to stupidity and ignorance. It’s unfair to assume the worst without ever considering more charitable reasons.

What if we thought of these parents charitably and considered more reasonable explanations that left their goodness and humanity intact? Perhaps there’s some rationality at the root of it all if we try looking at it from their point of view.

My initial attempt years ago at a most-charitable theory was to assume the core issue was lack of knowledge. This seemed like the least-bad way to understand it, since a good person can still do harm if they simply don’t know what is best.

The problem with this theory is that it has now been proven wrong. If lack of knowledge were the problem, then as the consequences of insufficient vaccination rates started happening I would expect rates of refusals to go down as increased media attention informed parents that vaccinations were, in fact, good and necessary. The increased pro-vaccination reporting, data, and analysis would directly address the root of ignorance at the core of the anti-vax movement, and the problem would go away. Instead, the opposite has happened. More and more parents are refusing vaccinations.

The issue, then, goes well beyond simple lack of knowledge. A more nuanced understanding is necessary.

What does existing science say?

I did a non-exhaustive review of current literature. The role of social media has been studied, the results of which suggest the format of social media may play a role in creating and maintaining anti-vax sentiment. Studies have been done to try to find correlations within the anti-vax community. Data suggests anti-vax sentiment is correlated with other conspiracies and anti-government sentiment. Other work has been done to test the ignorance theory by information participants, with statistically-significant positive results; it is implied by some of these studies that increased knowledge is the best and perhaps only way to improve vaccine attitudes.

The ignorance theory seems to be the go-to theory for researchers, many of whom seem to take it for granted that ignorance must be the only reason. This has resulted in a lot of insulting analysis that cites things like the Dunning-Kruger effect, which is a jargon way of saying parents who don’t vaccinate their kids are just ignorant prideful idiots. However, despite so much research proceeding with the ignorance theory, very little has been found that reverses this assumed ignorance, which strongly suggests that ignorance isn’t the core issue. Nevertheless, it seems study after study can only think to try different ways of informing anti-vax people, which may sometimes produce statistically-significant results in a lab setting, but does not appear to actually make a difference at the larger scale and in real life. If more information were all that was necessary the anti-vax movement would have evaporated years ago.

There was one review paper I found that hints at the role of trust. Researchers examined dozens of previous studies focused on understanding and changing attitudes towards vaccinations. They concluded that not enough research has been done on the role of trust in anti-vaccination attitudes:

The findings of this review indicate a disconnect between the current vaccine hesitancy research and the wider health-related trust literature, a dearth in research on trust in low and middle-income settings, a need for studies on how trust levels change over time and investigations on how resilience to trust-eroding information can be built into a trustworthy health system.

It seems there isn’t a current scientific answer to my hypothesis of trust. It remains a blind spot in our understanding. The World Health Organization has produced literature on trust in vaccinations, though it appears aimed more at people in ‘developing’ nations whose distrust of vaccines is of a different nature than people in the US and similar nations.

What do existing studies say about the demographics of anti-vaxxers? The data I’ve found suggests the overwhelming majority of them are women, and that they tend to be affluent. According to what can be gleaned from public social media, anti-vaxxers are mostly women who feel “structurally oppressed by seemingly tyrannical and conspiratorial government and media”.

What I’ve found.

I did my own informal survey of anti-vaxxers. This started with a comment I read online that mentioned a key concept I hadn’t heard before: the idea that there are CDC whistleblowers. I initially passed by this suggestion without giving it much thought, but after a few days I realized the weight of that notion. It implied that the CDC was an evil organization that could not be trusted.

Further digging showed more lack of trust in government, academic researchers, the funding agencies supporting those researchers, and in society in general. This means that every possible link to a study or data I might present to an anti-vaxxer would be ignored due to the source. The issue, it seems, isn’t so much about lack of information, but about sorting trustworthy information from lies and falsehood.

It seems most people, including most researchers, assume there is trust in the traditionally accepted sources of information which we might generally call science. Specifically, there is a lack of trust in medical science. This is critical because there is a world of difference between informing someone and gaining their trust. Simply pumping out more information won’t help because there’s already an abundance of good information available, but it’s rejected categorically as a result of this broken trust.

The reality is almost no one has any direct knowledge of the efficacy of vaccines, or much of anything, really. We know every little about the world via our primary senses. Nearly everything we know is based on information from others whom we trust. Our understanding of the world is built from a million different external sources which we cannot test ourselves directly, so we’re left to trust them. If that trust is lost, however, a person can spin off into all kinds of false realities that may persist thanks to our inability to test directly the truth of most scientific claims. The modern internet is particularly well-suited to build and maintain these alternate realities built of conspiracies, just one of which is the anti-vax movement.

How was trust lost?

As previously noted, nearly all anti-vaxxers are women. This must be taken into account. It implies that whatever is breaking trust in medical science is affecting women far more than men. There are a lot of factors that play into the overall erosion of trust between people and medical science, but issues driving the anti-vaxxer movement specifically must be coupled strongly to gender and/or sex.

I can’t help but believe this has everything to do with the ways medicine has betrayed women and continues to betray them. One does not need to search very far to find a litany of crimes against women in the medical field. There is a long and terrible history of women being abused, neglected, lied to, and generally mistreated by doctors and medical researchers. This is still killing women. There are many forms of this mistreatment, from being ignored and mistrusted in general, to obstetric violence, that which happens during childbirth. There is sexual violence during physicals so hidden and routine than a single doctor may get away with it hundreds of times, as Nassar did. Studies indicate the problem is men and the victims are overwhelmingly women.

For some readers there is no need to imagine this because they have experienced it. For those who haven’t, particularly for men, I want to ask you to take a long moment to consider the psychological damage of being hurt by someone you trust. We are told to be vulnerable with doctors, to expose our bodies to their sight and touch, to let them examine us, to judge us, and to heal us. Consider what it would mean if a doctor abused you, hurt you, and broke your trust. Here is a person who society has upheld as trustworthy and good, complete with expensive degree, and yet they have mistreated you. Might that not erode your faith in the medical system in general? A rational, sane person couldn’t help but lose trust.

One particularly visceral area of betrayal is the endemic mistreatment of women in pain. Doctors, especially male doctors, are more likely to ignore and otherwise mistreat the pain of women. It would be an unforgettable betrayal to be in terrible pain and have a doctor at a hospital tell you you’re wrong, that you don’t feel pain, and that you will not be treated for it. A woman in this position is presented with the primal reality of her own pain, and then a doctor who denies that reality by letting her suffer, and who then adds insult to injury by saying or implying that she’s a liar. Even once would be enough for a sane person to doubt the wisdom and effectiveness of medicine, but imagine if this happened over and over with different doctors at different hospitals. A rational person would easily see that as a pattern indicting the entire system.

It doesn’t take much imagination to see how a sexist medical system that systematically destroys the trust of women could result in women who stop trusting the medical system!

Seen in this light, I can’t help but think that the rage directed at mothers is just more knee-jerk sexism. It looks like another instance of blaming women for reacting sensibly to a system that is irrational. We all just assume that these women are just too stupid/ignorant/whatever to connect the dots and heap scorn upon them without apparently ever asking them why they are so afraid to trust doctors. It seems the real blame, though, lies with the doctors and the medical field in general. They are communicating in so many ways, many of which are painful and violent, that women cannot trust them. Distrusting vaccinations is just one facet of this overall failure of trust.

Signal amplifiers: the problem of social media

People will try to make sense of their reality whatever that happens to be. Many women probably react to the betrayals by reaching out to other women who have gone through similar experiences, both in-person and in published forms, along with reading studies that prove the statistical reality of sexism in the medical field. This probably helps put that betrayal into a context that fits reality. They might find methods that let them escape such betrayal the next time, perhaps by switching to a female doctor or choosing home birth, or some other means of finding a safer way to be a woman with medical issues.

However, it’s also possible to end up finding people who confirm your reality with conspiracies and grand schemes that reach far beyond the confirmed scope of the real problem. Social media and attention-seeking content serving algorithms conspire to put the scariest possible articles in our search results without any consideration for reliability or truth, since more fear means more clicks, leading to unsubstantiated conspiracy theories being over-presented. If these conspiracies confirm a person’s reality as they have experienced it, then a rational person might end up buying into nonsense.

This nonsense is amplified by online communities that actively draw in and engage new members. A mother sent reeling after a betrayal by a doctor might feel welcomed by a group of women who validate her experience and offer support. In these insular online anti-vax groups she is surrounded by real people treating her as a real person. Her experience made her feel under attack by some kind of hidden conspiracy, and now she has others to support her feelings.

Her feelings of being attacked by a grand conspiracy may be reenforced by those who oppose anti-vaxxers. They tilt at her with rage, accusing her of things she knows are false: she knows she loves and cares for her children, and isn’t going to listen to anyone who suggests otherwise. If she got to this place based on rational reactions to painful situations — a doctor denying her reality — she isn’t going to buy someone calling her irrational or crazy, because she knows she isn’t any of that, either. Her community further galvinizes her by serving up all the evidence and proof she needs to handle the accusations of ignorance and lies.

There are additional factors that go into it, of course. The point is there are rational, experienced-based reasons why a sane woman might come to believe the medical field is not trustworthy. It’s a short jump from that to distrusting the medical science behind vaccinations, particularly when somene gets stuck in a truth-warping conspiracy community.

Attacking the character of mothers will not do anything to correct this, and will only make things worse. It is making things worse, as data is showing: the more people rage at anti-vax mothers, the more they decide to refuse vaccinations. A better way is needed.

Conclusion: Rebuilding trust is the key to getting kids vaccinated.

I don’t know exactly how to rebuild trust in situations like this, but I know it’s a highly personal thing. It might help if more people were curious about why a parent would distrust medicine instead of simply attacking them. I doubt any of the angry salvos I launched on social media changed any minds, but perhaps more change could occur if we approached in a way that granted the humanity and goodness of anti-vaxxers in order to start to build trust. Starting from a place of mutually-recognized humanity could only improve dialog.

What definitely needs to happen is individual doctors need to engage with individual women and mothers, person to person, and establish a trusting relationship in which women are respected, listened to, and taken seriously. Doctors, especially male doctors, need to humbly examine their behavior for any signs of sexism and work to correct it as if lives depended on it, since lives do depend on it.

There need to be systematic changes aimed at making medical care safer for women. A sexist system is one that will inevitably break the trust of women. This change has to happen, and it has to be big and loud and honest, so that women who have been hurt by it aren’t made to feel crazy or like the system is conspiring against them. If doctors can boldly recognize the sexism at work, then there isn’t any need for conspiracies because there is obviously no conspiracy. This could go a long way to rebuilding and maintaining the trust mothers need in order to believe doctors when they recommend vaccinations. All the citations and infographics in the world won’t do much good without trust.

None of this excuses the harm caused by parents failing to vaccinate their children, of course. It does, however, suggest there are ways to improve vaccination rates that don’t involve bullying mothers who already feel out-of-control and attacked by a medical system that may have already hurt them. There might be a gentle path to sufficiently high vaccination rates, assuming the medical field is ready to stand accountable for the harm they have caused women as a result of sexism.