Why we need to fight misinformation about vaccines

12.07.2019 - TED: Ideas worth spreading

Why we need to fight misinformation about vaccines
(Image by TED)

Ethan Lindenberger

TEDxMidAtlantic 

To start, I want to share with you guys something about my hometown of Norwalk, Ohio. Now, as this video stated, I am from Norwalk, which is an extremely small town, about 15,000 people. And really, in Norwalk, if you want to do something fun, you go to Walmart or drive half an hour to something more interesting. And for Norwalk, I’ve lived there for my entire life, I’m a senior at the local public high school, and you know, it’s something to where I really enjoy my small town. And I’m just a normal kid, you know, I lead debate clubs, I volunteer at my church.

And back in November of 2018, I made a small Reddit post asking for advice on an issue that I was encountering that I needed some clarification on. And this issue, as was stated in the introduction, was something towards vaccinations and how I was not immunized against various diseases, including polio and measles, as well as influenza, HPV, hepatitis — the standard vaccine someone my age would receive. Now, this question I asked was simple and pretty strange, because, you know, I wanted to get vaccinated. That’s kind of weird, but it happened, and then this turned into a public story, because I wanted to get vaccinated. So that was kind of strange, and then it blew up more, and I was doing interviews and talking to more people, and again, I’m a normal kid, I’m not a scientist, I don’t lead a non-profit, I am a pretty casual person, I’m wearing a hoodie.

(Laughter) Because of this question and this story, because I wanted to get vaccinated and this interesting situation I was in, I saw that I quickly was in this public setting of an extremely important controversy and discussion taking place. Now, I saw that the stories and headlines were pretty accurate for most part, you know, “After defying anti-vax mom, Ohio teen expresses why he got vaccinated.” Pretty accurate, pretty true. And, as stated, I testified in front of a Senate committee, so there, they said, “This teen who self-vaccinated just ripped his mom’s anti-vaxer beliefs in front of Congress.” OK, I didn’t really do that, but that’s fine. And certain news outlets took it a little further. “‘God knows how I’m still alive’: Teenager, 18, finally gets vaccinated and attacks his anti-vax parents.”

So I did not attack my parents, that’s not accurate at all. And you know, really, my story was more about controversy. It was about how my mom was bad and I was good, and I was ripping her a new one. Not true. Not what was happening. I never was rude towards my mother, and even in public settings where I expressed how her beliefs were misinformed, I said that she was a loving mother, and that’s important to understand.

Because a lot of people, I think, in the scientific community that understand why vaccines are so important, can really be confused by someone who would not vaccinate. Really, we can compare it to someone not taking their child to the ER. That’s a very dangerous situation to be in and it shows some lack of empathy towards your children in some regards. And really, I can understand that, I can. But my mom, she was misinformed and misled by sources that convinced her that if she was a loving parent, she wouldn’t vaccinate.

Now, when I encountered this and I talked to my mom, it didn’t obviously go well at first, because I was wanting to do something that she thought would either cause autism or maim me for the rest of my life, and I said I wanted to do this — didn’t really fly, didn’t really go well. But the thing that I found interesting was that when I had started to get into this circumstance, do these interviews, there was one question I proposed. Wasn’t a positive one: What in the world have I gotten myself into? That’s what I asked constantly, because, again, I am not an expert, I am a normal kid, and now I’m talking to CNN and Fox News about a scientific discussion that really, should I be facilitating, should I be commenting on? And a lot of people questioned that, and for good reason. 

But I never claimed things I didn’t understand, I talked about my personal experiences. And even at the Senate hearing, I just talked about how misinformation is dangerous. My mom got a lot of her beliefs from social media, from Facebook and from organizations that were allowing their platforms to push lies that were very dangerous.

Now, I also saw that as I was doing this — and I was doing this as respectfully as I could, as accurately as I could — I was getting a lot of criticism, a lot of very angry people. When I was in DC for that testimony I gave, I was looking around the office building and three ladies got in an elevator with me and said I’m the reason their children are being maimed and murdered and I’m basically Hitler. So that was fun.

(Laughter) So really, for most circumstances, for most teenagers and most people, when they get criticized, it leads to doubt. And that doubt leads to questioning, and that questioning leads to quitting. Because, when you have a topic that you’re interested in, or a movement that you want to be a part of, and you’re taking a stance and saying what’s true, good ideas don’t avoid criticism. And for especially young people, they have a hard time dealing with that, and these important discussions that need young people to take a part in, it takes a lot of commitment.

I’m not saying that I’m amazing, but here’s what’s important: through me joining this movement and this important scientific discussion, here’s what happened. Facebook changed their platform. They were going to change how they approach anti-vax content. Amazon even removed misinformed books about autism and vaccines. And recently, GoFundMe took down anti-vax campaigns. We’re talking about how movements like this are causing actual change, actually impacting the way this game is played and the misinformation that’s lying to people and convincing them of very dangerous ideas.

Now, before I leave, because I only have a short amount of time, I want to give you one important thing to keep in mind. One important takeaway from this all. What you can do and what I did. I didn’t do amazing research and studies and take information and present it to people; I didn’t have deep, intellectual, scientific debates with people. All I did was share my story. And that’s enough for most people: to understand the anecdotal experiences, the real people behind the data. Because data doesn’t resonate with people. People resonate with people. And you have to keep that in mind, because when you are talking about a topic, and you’re sharing your story, and sharing what is important, you stay authentic. Stay authentic to the data, to the information, to the importance of this topic. 

If I was talking to an individual and they said, “Why are vaccines important?” I would say nothing alongside any other answer, I would not in any way fathomably give them answer outside of: people are dying, and that’s important. And that children are dying, and that’s important. And that we’re having disease outbreaks that should not be here. And I believe, as John Boyle put it, these diseases should be in history books and not in our communities. So because of that, you need to make a personal decision to stand up for truth. You need to make a personal decision for yourself to say, “This is accurate, this is what’s real, and these lies are not OK.” Because it started with me doing that on a personal level.

I wasn’t going from small town to Senate in a day. It wasn’t like, I go to bed, I wake up and there’s Senator Isakson, asking me questions about vaccines. It was a slow progression and it started with me saying, “This is true, my mom doesn’t believe it, but that’s OK.” Because that doesn’t change the truth, doesn’t change what’s accurate and what’s important. And honestly, the biggest thing, this whole idea of unbreakable: remain unbroken. When you stand up for what’s true and you have that criticism, and you’re trying to cause a movement, don’t sway.

Thank you.

(Applause)

Watch the TED video here

 

 

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