Thoughts on Vaccination Hesitancy Learned in the Special Needs Community
Vaccine hesitancy is an old debate for us.
*Necessary disclaimer: I am fully vaccinated. As is my family.
I don’t really have an answer for people refusing to get a Covid-19 vaccine for political reasons. And I’m not going to spend any time thinking of one. Our best hope is that there’s just not that many that think they’re serving a political cause by putting themselves at higher risk of contracting a deadly virus. It may be a bad bet to take, but the one I’m taking is that there’s far less of them than there are people who are genuinely concerned that taking the vaccine is a bigger risk than not.
We’re going to find out one way or another over the next six months or so who is right about that. The early indications are that most of the vaccines are pretty effective at limiting transmission of the new Delta variant and extremely effective at limiting hospitalizations and death. And so the questions are whether or not that pattern continues and if it does, how do we try to win the race of convincing people to get vaccinated in advance of the death toll spiking to the extent that they can’t ignore their risk. That second question is where I’d like to spend some time.
You may not think that people who won’t get vaccinated are worth trying to save. I’ve got some experience that might make you think differently. And in that experience there’s a bit to learn about how we can engage those unwilling to vaccinate so far.
For much of the past four years, before the pandemic took my kids out of in person learning, my wife and I have run a non-profit focused on providing mental health counseling to parents and care takers of special needs children and adults. In doing so we have engaged in hundreds of conversations with people in this community. And we’ve had the chance to observe some patterns.
What’s clear is that this population is full of people who have been deeply let down by the modern medical and healthcare establishment. And by let down, I don’t mean inconvenienced. I mean that the single most impactful part of their lives, a loved one with a chronic debilitating or incapacitating condition, has gone entirely unsupported, un-investigated and hand waved away by a medical community that doesn’t know the answer to their problems or has no incentive to help them find them.
I have a friend who flew around the country for years seeking an answer to why her son was having seizures, could not talk, walk or develop intellectually. Imagine going to the doctor and getting the collective shrug for that question. There was an actual diagnosis for a known condition by the way. How do a dozen doctors miss that? And how do you trust another one ever again?
That’s an extreme case. But the common thread in this group is that the medical establishment doesn’t give us any useful answers to the biggest problem in our lives. And the tone is often patronizing and condescending. A doctor once told my wife and I, with a combined five higher education degrees including ones in childhood development and public health, that we shouldn’t “get any ideas” about a cure for whatever it was that our son had. Which by the way was something called pervasive developmental delay, non-specific. He’s 14 and doesn’t speak conversationally and requires 24/7 in person supervision. We don’t know why.
Now go get your vaccines.
At the center of our lives is a giant question. What’s wrong with our child? And we’re hit over the head with it every day of our lives. And the group we trust to tell it to us gives us no answers. So we do what smart humans who give a shit about something do. We fill that void with information. And it’s not always good information. The world of special needs parenting is full of desperate people. And desperate people are marks for others slinging bullshit and nonsense. And one of the things that bullshit and nonsense is spread about is vaccines.
These parents are not conservative political hacks. They are mothers and fathers, often educated believers in science who often tilt or even tumble over liberal in their politics. And they’ve got suspicions about the government telling them to get a vaccine. Now simply apply that mental framework to something broader than special needs parenting; anyone who has ever been let down by the establishment (medical or otherwise) and told that their problems aren’t to be solved. And that they shouldn’t “get any ideas” about how to solve them.
Ross Douthat is on to something here.
Despite reasonable doubt in the modern medical establishment, my family is or will be fully vaccinated shortly. My wife and I got ours as early as we could as primary caretakers of a special needs child. It’s insufficient to explain why by simply saying because we’re smart or because we didn’t vote for Trump. Why we were vaccinated is because we valued the risk of getting vaccinated to be less than the risk to not being vaccinated.
That’s it. A is greater than B.
The reason other parents like us aren’t getting vaccinated is because they value the risk to vaccination higher than we do. And the reason we value it lower is for two reasons. The first is that as a military service member during the War On Terror, I was vaccinated regularly against emerging threats; anthrax, small pox, other. I had no ill effects and I am therefore confident that the trend will continue with this vaccine. The second is that my wife has a degree in public health and worked in the public health field for years. So we both had prior exposure to the public health apparatus before our poor outcomes with our son. And so we view the experience with our son to be an exception to the trend. We trust the system for a great reason. We have deep experience with it.
The trick then is to duplicate that for others.
Shouting at them won’t work. Shaming them works a little better but not well enough. The only thing that works is exposing the benefits on blast. And showing proof that the risk is low. This point is critical though. Trying to suppress bad information doesn’t actually limit the perception of risk. Censorship is like cat nip to people who don’t trust and those who gain power by riling them up. This lesson is learned over and over in crisis. I have otherwise rational people in the special needs community beating me with anti-vax conspiracy theories that you would think only an insane person would believe. But they believe it because it validates the mistrust they already have in the institutions that have given them reason to mistrust them.
There will be lies and nonsense and terrible takes. In the end, the reality bleeds through in the numbers. Censoring the nonsense leaves the door too open to discredit the truth. We should refute it. We should counter it. But if you try to stop a lie before it’s said than you’ve robbed the offender of their offense and turned them into a victim. And their words grow in strength.
If what we believe is true, we’re going to see people who haven’t been vaccinated suffer poor outcomes over the next few months. And people who have suffer fewer poor ones. We need to continue to tell people what the score is. And what they should do in order to get the best outcomes. And NOT force them to admit they were wrong. They won’t. In their mind they needed more evidence. And so we should make that more evidence as easy to get as possible.
No one benefits from another severe outbreak, even limited to the unvaccinated.