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How one vaccine skeptic became a vaccine supporter

Libby Nelson is Vox's policy editor, leading coverage of how government action and inaction shape American life. Libby has more than a decade of policy journalism experience, including at Inside Higher Ed and Politico. She joined Vox in 2014.

The best book I read about science in 2014 wasn't by a scientist or a doctor — it was by a poet and essayist, Eula Biss. On Immunity: An Inoculation is part narrative of Biss's own decision to vaccinate her son, and part exploration of the broader social significance of vaccines and immunity. It's remarkably empathetic toward mothers who fear vaccination while persuasively arguing for the morality of vaccines.

The measles epidemic in California has made the importance of vaccination clearer than ever. So I called Biss, a lecturer at Northwestern University, to talk about her own journey — she started out as a mild vaccine skeptic herself — and about what the conversation about vaccines might be missing. The transcript of our conversation follows and has been lightly edited and slightly rearranged for clarity and length.

Libby Nelson: What made you interested in the question of whether to vaccinate? Why did you decide to write about it?

Eula Biss: I started reading about this issue for purely personal reasons. I was pregnant with my son and I had heard only the vaguest rumors about vaccination. I had not been paying attention to the debate at all. I started reading on the subject because I was curious to find out if there was anything behind the fears that I’d heard on the subject. And I wasn’t planning to write a book.

But what happened is, even after I’d answered my own questions — and, really, the question I was trying to answer was, should I vaccinate my child and should I follow the standard schedule? — once I'd answered those questions I found that I was still really interested, in part because I’d discovered by then what an expansive subject it is and how it touches all these other subjects I have a lot of interest in. it touches on sexism, environmentalism, our relationship with the government, capitalism, our relationship with the health care system… I think it hadn’t occurred to me that the subject was as big as it is and as complicated as it is. That’s when I knew that I had a book on my hands. It was a personal quest that became a book project.

LN: I think a lot of people don't see vaccination as big and complicated. They see it as either you believe the science, or you don't. Why is it bigger than that?

EB: I think what can be really confusing about this subject is a lot of the conversation and debate is conducted in scientific or pseudoscientific terms, and it can appear to be a debate about science, or it can appear to be a debate about information… I think that can be a kind of smoke screen for what’s really going on when we talk about this.

Scientists are not debating vaccination. It’s a social debate. it’s a social debate that’s being conducted in the terms of science. We’re using the language of science and the products of the scientific process to talk about other things.

With this measles epidemic, it’s becoming more obvious that one of the conversations that’s happening subtextually — and now increasingly not subtextually, but overtly — is the question of what is the relationship between the individual and the collective? What does the individual owe society, and what does society owe the individual?

The root question is a question of how do we live together? What’s a responsible way to be a citizen? And I think those are big questions that are then, complicated, by the historical and political baggage that people bring to the conversation.

LN: What sort of baggage do you mean?

EB: For a good number of women, this subject is complicated by what we know about the history of sexism in medicine. We know, those of us who are familiar with the history, even slightly, even obliquely, we know that medicine has not always acted in our best interests.

If you read a lot of anti-vaccine material, you’ll see a lot of anxiety about capitalism there. That part of the discussion is interesting to me. I feel very critical of capitalism. it’s not a system I feel is serving the bulk of the population very well, and I think those critiques that are made in the anti-vaccine space are sometimes apt, but they’re also overapplied. So capitalism, yes, is not serving us well, but does that mean that we can’t use the fruits of capitalism to better each other’s health? To me, that’s a really interesting and, I think, pressing question. That we’re operating within a broken system doesn’t mean we have to turn on each other, more or less.

The more I learned about vaccination and how it works, and what mass vaccination is meant to do and why we use it, the more kind of beautiful I found it, actually, in terms of being actually counter-capitalist in its ethos. Here’s a system that’s based on people voluntarily using their bodies to protect other vulnerable people. I just think that’s very different than a lot of what we see in this competitive, mercenary space of capitalism.

LN: That's the most poetic description of herd immunity I've ever heard.

EB: Thank you!

LN: But what are people really afraid of when they say they're afraid of vaccination?

EB: I think that if you talk to [people who oppose vaccines] and talk to them well and long and deeply, I think you’ll find their reasons are different from each other. We make the mistake of grouping everyone who doesn't vaccinate together in one group, and just because their actions are the same doesn’t mean their reasons are the same.

That’s one of the more interesting and surprising things I discovered: people had really varied reasons for not vaccinating. I think if we had to group all those reasons together — which I just said we can’t and shouldn’t do! — I think there is a kind of fear of the unknown under it all. Vaccination is kind of emblematic of something that feels to people like something they don’t fully understand, or they’re afraid science doesn’t fully understand. The fear is that we don’t really know what we’re doing to our body when we do this, and it might have consequences we can’t foresee.

There are people whose fears or concerns are more pointed or specific. People who have concerns about how pharmaceutical companies operate, or they are in general wary of pharmaceuticals. There’s people who have strong feelings about our medical system and who don’t want to participate in that system, even in the realm of preventative health.

And I think there’s another reason. It’s about people identifying as outsiders, taking on a political stance that is counter to the mainstream, counter to popular culture. That’s also something I identify with, and that’s part of what made writing this book a struggle. I actually very much respect the strength that it takes to position yourself against the mainstream. And I can relate to that positioning in a lot of different ways, in part as a poet.

LN: How did you reconcile those positions?

EB: I’d like to limit my participation in the medical system. One of my goals is to keep my son out of the hospital as much as possible. The hospital is a dangerous place to be… But preventive medicine is one of the best ways to accomplish that goal. if I don’t want him to be hospitalized for pneumonia he’s developed after chicken pox or measles, it’s probably in my best interest to vaccinate.

I found in my research that [vaccination] seemed to be a place where toeing the line didn't have to be about accepting mainstream values. When I really examined what was important to me, and what my values are, and who I want to be in the world, and then also looked at what vaccination is and what it does, I found that those things aligned. It seemed to me that the best way to enact my values was to participate in a system — that is, yes, a mainstream system that’s supported by both the government and the health care system.

LN: What are we missing in the measles epidemic conversations about what we should do with anti-vaxxers — should we berate them into submission, should we shame them, should we force them to vaccinate?

EB: I've been interested in this for so long and it’s never been talked about this much in the six years that I’ve been reading everything I can get my hands on about vaccination. It’s kind of exciting to see this really enter the public conversation in this way. But it is somewhat upsetting to see the level of -- the degree of anger and vitriol and the intensity of the attack on people who are not vaccinating. Part of me understands that, but part of me has been reading this and thinking, what is this really about? What is this intense anger really about?

And I don’t know. But one of my guesses is that it has to do with a kind of long-brewing anger about how bad Americans are at sharing. That’s my best guess. When I see the vitriol and the anger in this subject, I’m reminded of how I feel sometimes when I’m at a playground with my son, and I witness a situation where a parent is really failing to teach a child how to share well.

It’s similar to the anger I feel when I’m riding my bike, in a shared space on the road, where I have to share that space with cars and pedestrians and people can be bad at sharing that space and I can be angry because it puts me in danger. I think there might be some of that anger feeding on this. The sense of, why aren’t people better at sharing this space? And why won’t everyone contribute? We need everyone to contribute for this to be a functional system.

LN: You mentioned vaccine scheduling, and vaccine delaying is an issue that we at Vox are interested in and writing about. What did you learn about the schedule while writing your book?

EB: I originally assumed I would do make my own schedule. I’ll do this my way, I’ll figure out what’s important to do when, and I’ll set my own priorities. And part of me felt like — well into my research — what’s the harm? I [didn't] see any reason why someone shouldn’t do that as long as the child is eventually fully vaccinated.

A few things changed my mind around that. One was beginning to understand the complexity of the decision-making that goes into that schedule… One of the things that’s being weighted is when diseases are the most dangerous for a child. The other thing that's being weighed is when these vaccines are most effective… Some vaccines are timed because that’s when the immune system is likely to mount the most vigorous response. So there are all of these factors at play, as well as really complicated assessments of when people get diseases and how they spread.

The very first vaccine is [Hepatitis B], the vaccine that I skipped initially for my son, it’s usually required within 12 hours. I knew almost nothing about the disease when I did that. I had talked to a pediatrician who told me I didn’t need to worry about it, so I didn’t and I skipped it. And later on in my research I learned a lot about the disease and came to understand why that vaccine is recommended when it is -- infants contracting HepB are most likely to contract while they’re being born, and to contract it from a mother who’s not aware she’s a carrier.

This kind of hit home for me after my child was born and I did this research, and I realized that I had gotten a blood transfusion immediately after my son’s birth. It put me in a risk category for Hep B. A small risk, but a risk. I could have potentially have passed Hep B to my child in his infancy, and I could have avoided that potential by having him vaccinated on schedule.

That’s when I began to think, oh, this schedule is anticipating things that i am not anticipating. There’s all these minds at work… to create a schedule that’s designed to foresee eventualities that your average parent is not going to foresee. The longer I spent doing research and talking to some of the people who helped design the schedule, the less confident I felt about rewriting it on my own, with my own very limited and partial knowledge and haphazard background that does not include a lot of biology or statistics or epidemiology. And so I started to feel fairly strongly that it wasn’t my business to undo this work that had been done.

There are several diseases on the schedule I’m not that concerned about — chicken pox is one of them. I didn’t care that much whether or not my son got chicken pox. Once the rationale behind that vaccine was explained to me, I realized… I didn’t want my son to be the child who gave chicken pox to a family who did not want their child to get chicken pox. For that reason I was going to vaccinate him.

LN: One thing that really struck me about your book was how much empathy you had for people who disagree with you. How can we introduce more empathy into the conversation?

EB: I’m not sure that we have a good understanding of why people don’t vaccinate. And I think that could produce more empathy. When I’ve talked to people in a really sustained and in-depth way about why they’re not vaccinating, it’s often complicated and multifaceted and has a lot to do with their personal history and their relationships sometimes to the government, or sometimes to past experience with medicine.

In the book I wrote about a friend whose parents are Vietnam refugees and who were exposed to Agent Orange. She’s just one example of many, but it’s not hard to see how someone who had very dangerous chemical exposure as an infant would be wary around things that are chemicals or pharmaceuticals. It’s also not hard to understand that someone whose family and whose homeland was so deeply affected by the policies of our government and the actions of our government would have a problematic relationship with that government. And I don’t think that’s actually an outlying case. I think there’s a lot of people who have complicated backstories, and they’re either around politics or sexism or medicine, and those things are feeding into why they’re not vaccinating.

LN: What other factors might be driving this?

EB: We live in at least, I, live and participate in a parenting culture, an upper middle class, usually white, well-educated parenting culture, that really encourages and supports fear and fearfulness.

Fear is understood as a sort of intelligence in this culture. Promoting fear in another parent or mother is seen as a kind of favor. If you don’t think somebody’s feeling afraid enough, your job is to scare them. I think the other way into empathy is to look at how scared people are, and to think about why they’re scared, and what’s happening culturally to support and encourage that fear.

In general, not just within the parenting culture but in the culture at large, we’re kind of enthralled to fear right now. And you can see it in on national level ‚ we’re doing all kinds of immoral things, including torturing prisoners, because of our fear of terrorism, and other kind of national level fears. You can also listen to domestic space, you can see that we have laws that allow a person, for instance, to kill an unarmed teenager because they’re afraid of that teenager.

We need to have empathy for people’s fears. I don’t think that means we have to be permissive around how people treat their fears.

LN: Why should people listen to you on this? You're not a scientist or a doctor. What do you bring to this discussion that people with greater scientific and medical knowledge do not?

EB: I don’t think people should listen to me on this. I've been getting a lot of calls and being asked to talk on this subject a lot, and I’ve put some effort into trying to make people understand I’m not an expert in infectious disease. My husband has been joking about this, he’s going to make me a button that says, "I’m not an expert, I’m just an essayist."

As much as I don’t have expertise in this area, I do believe in the tradition of the personal essay. I think part of what the personal essay can do and does is -- when an essayist thinks hard about a subject and does her best to inform herself well, that thinking can be a road map about other people’s thinking.

The essay isn’t meant to answer all the questions someone would bring to this subject. Particularly in my work, it’s often my intention to open questions rather than close them. That’s part of what someone would want to get from my work — a sense of which questions we should be answering, not so much what the answers are.