Grandparents for Vaccines is a nationwide nonprofit that aims to educate the current generation of parents about vaccine-preventable diseases. Launched in September, the group has produced videos of grandparents describing what it was like to endure or witness their friends, classmates and relatives battle illnesses such as polio, measles and pertussis before vaccines for them existed.
The group’s launch comes amid rising vaccine skepticism fueled by misinformation about the safety and efficacy of vaccines. A recent poll by the Kaiser Family Foundation and The Washington Post showed that 1 in 6 parents in the US have delayed or skipped vaccines for their children. Teri Mills is a founding member of Grandparents for Vaccines and a retired public health nurse who was named “Oregon Nurse of the Year” in 2019 by the Oregon Nurse Foundation. She joins us along with Sheri Schouten, a retired public health nurse and former Oregon state lawmaker, to talk about their work with Grandparents for Vaccines.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. The U.S. Centers for Disease Control and Prevention under the previous administration listed vaccines among the 10 great public health achievements of the 20th century. The World Health Organization has said that globally, immunizations have saved at least 154 million lives in the last just 50 years.
But childhood vaccination rates in the U.S. are dropping and vaccination exemptions are at an all-time high. This is why retired Portland nurse Teri Mills and others formed the group Grandparents for Vaccines. They aim to use their often harrowing experiences to educate the current generation of parents about vaccine preventable diseases.
Teri Mills joins me now, along with another member of the group. Sheri Schouten is a retired public health nurse who served in the Oregon House of Representatives from 2017 to 2023. Welcome to both of you.
Teri Mills: Thank you so much for having us
Miller: Teri first – what are your memories of polio or polio survivors when you were a kid?
Mills: So my strongest memory of polio actually was when the vaccine came out. I remember the school nurse came to our door. I have a twin sister, and she knocked on the door and said, “you’ve got to get the twins to school, we have a polio vaccine available for them.” And my mom was just so overjoyed. I remember her crying. I remember lining up at the school, the lines of kids were wrapped around the blocks. And I still remember that little paper cup with the sugar cube. It was just a lot of jubilation.
But the stories that we’re hearing from Grandparents for Vaccines that have had the disease, they’re the ones that need to be shared.
Miller: For people who never saw what polio looked like or meant, the effects it had on people, what have you heard?
Mills: Well, one of the stories that I heard that really touched me because being a twin. This gal Jan had a twin brother, Frankie. And right before Halloween, Frankie started having a cold and it turned into polio. Jan remembers that he was rushed to the hospital, he was on his way to get a tracheostomy because he couldn’t breathe, he was paralyzed. And he died on the way to the operating room. Jan shared she was never apart from her twin, she begged to go to the mass, she begged to go to the funeral. And just a few days later, she came down with polio and went to the same hospital where her twin brother died.
Miller: I’m thinking back to your memory of lining up in school in a kind of jubilant time to get the sugar cube with the polio vaccine on it. What would you have said then if someone told you that 60 years later there would be a really successful movement to push back against all kinds of vaccines?
Mills: Well, I just think that it’s disappointing. And that’s why Grandparents for Vaccines formed, because we’re so frightened as grandparents, knowing what it was like to suffer from these really horrific diseases. And we don’t want to see the same thing happen with our grandkids. They’re our legacy, they’re what we love the most in the world. You cannot argue the bond between a grandparent and their grandchild. So it is something that we were passionate about.
Grandparents across the country are joining our organization, Grandparents for Vaccines. It’s very easy to find us. They’re coming out and they’re talking about what it was like to have these diseases, because it’s just something that our own children, they don’t know what that’s like. They were vaccinated, so they never saw it.
Miller: Sheri, you’ve told a story for this group about being immunocompromised when you were 5 years old. Do you mind telling us that story?
Sheri Schouten: Well, just before I started kindergarten at 5, I was diagnosed with lymphoma – it’s a type of childhood cancer. And I had been looking forward to going to school with all my friends in the neighborhood. Then all of a sudden, as far as I was concerned, I felt normal, but I was told that I had to have special treatment. And because of the special treatment that I had, radiation, that it wouldn’t be safe for me to go to school, because there were all sorts of diseases that if I had contracted them when I was immunocompromised, it could kill me.
Well, that’s very esoteric to a little kid. My first memories of childhood are sitting there on my couch watching all the kids go to and from school, and being really upset and not understanding why I couldn’t go. As I got older I understood that. But in those days, I grew up kind of fearful of these diseases because I thought, “those can kill you, that’s really serious.” So I would have been shocked to know that someday there might be people who would hesitate to get those kinds of shots.
Part of the reason I joined this group is I want to make sure people understand that these are real things that have happened and will happen again when there’s not enough people getting these shots. We can’t depend on herd immunity necessarily anymore. We have to be out there and make sure people know how important it is.
Miller: Would you have gone to school if vaccines for diseases that were still very prevalent [had] been readily available and readily used? If the vaccine rates for measles, mumps, rubella, pertussis, if they’d been at say 95% or 96% in your school, you would have gone to school?
Schouten: Oh, absolutely. That’s what, until recently, has been the norm. In fact, that’s what they look at when a child is going to enter school and they’re immunocompromised, what’s the status? It’s kind of like my mother used to always, when anybody would come to visit our home, she’d grill them about “are you well, do you have any fever?” So that depends on the school and where you go because that’s the bottom line, people have to be vaccinated to make those who are immunocompromised safe to be there.
Miller: You’re both grandparents and you’re both parents before that. I’m curious, can you describe the conversations – even to the extent that there were conversations when you were the parents of newborns or 4- or 5-year-olds – you had about vaccines some number of decades ago?
Mills: I remember when my children were born, it was just part of the routine childhood schedule. You took your kids in every couple of months or every other year, and it was just part of the exam. They listened to the heart, they listened to the lungs and you got vaccinated. There was never any questions asked. I don’t ever remember saying to my pediatrician, “I don’t know if this is safe.” It’s just something that was ordered, it was given and it was done.
And I think part of the reason, again, is because as parents, we had that visual memory of what it was like. I had the measles when I was 5 years old. I still remember crying hysterically by myself, isolated in a dark room, had extreme itching, nothing worked. And my mom, she could barely come into the room because we also had a newborn baby in the house. It just was something we wanted to do for our kids because we love them and we want them to be well. And that’s what we want for the grandkids in America today.
Miller: Sheri, you’ve been nodding there. It’s interesting because a number of things have happened at the same time that I think have contributed to vaccine hesitancy, or outright skepticism, or questions about timing – which are all sort of related. There is the lack of direct experience that Teri has been emphasizing. There’s also a loss of faith in institutions like public health organizations, agencies. There’s the backlash recently against COVID-19 protocols or policies. And then there is maybe the biggest piece of all, the intentional and unintentional spread of misinformation about vaccines, largely tied to debunked ideas about autism, but not only that.
So it’s a lot of things at once and it’s not just the lack of direct personal experience. I’m curious how, given all of that, your stories of your personal experiences can change younger people’s minds today?
Schouten: Well, I think we, as a culture, need to make sure we understand how to listen to information and discern what is the truth and what isn’t the truth, and more importantly, who do you trust? Because you can always find somebody to tell you any particular viewpoint. But is it somebody you trust? For example, I would trust the American Academy of Pediatrics, I would trust my doctor. I went through a lot of effort to pick who I thought was the best doctor for my children. So those are the people that I’m going to listen to, not some weird magazine or some odd person that you meet at a cocktail party.
Miller: Some person that the algorithm is served up on a video that you’re scrolling late at night?
Schouten: Right, exactly. So, I think that that’s the most important thing. And I think most people are lucky enough to have a family member that they trust. Often it’s a person in the family who maybe has a medical background. I know in my family, my kids always knew that I was a nurse and they always felt that I would give them the right information. Other family members or friends in the neighborhood would know “oh, talk to Sheri, she’s a nurse.” Nurses are well known for disseminating correct information about things like public health. So I think that that’s what we need to do. My experience has been when people don’t go to their trusted people, that’s where they get confused because they’re hearing misinformation. And that’s a big problem with social media. We need to focus on who’s the best place to get information.
Miller: Teri, piggybacking on what Sheri was just saying, the heart of your group, is the idea behind it that grandparents now have ways to directly talk to their own kids and grandkids? Or are you thinking that it’s broader than that, and that a grandparent can put a video out through your organization and somebody across the country will see that? I’m wondering why that person would be a trusted voice for strangers as opposed to for their own family?
Mills: I think that’s an excellent question. So there are 67 million grandparents in the country. We are present, we’re getting ready for the holidays, there’s going to be conversations happening across the country. And we’re hoping that vaccines will come up during the conversation. I do think that because everybody has a grandparent – they might not be alive – there is that source. But I also do think that when you watch these stories, they are very compelling, they’re very emotional, they’re very real. And while you can argue with opinions, you can’t really argue with lived experiences. And absolutely, when you watch them, you know they’re not made up. This has really affected an individual and it affects their family.
We’re also living in a time day where it’s not like it was when we were growing up. That’s when our mom stayed home. They had separate hospitals, a crippled children’s hospital, where they would send kids with these infectious diseases like polio away from their family. And we don’t have that now. What would happen if your child had measles and had to stay home for two weeks, and then their younger sibling caught it as well? It disrupts your job, it disrupts their schooling. Who is going to take care of the kids, because they can’t go to daycare?
Miller: Your organization has been spreading this word for a couple of months now, a number of people have joined. Have you heard stories where parents made the decision to get their kids vaccinated because of videos they saw, testimonials, stories they heard?
Mills: That is a great question, and that’s what we’re hoping for. That’s the whole goal of this organization. But we have just formed two months ago.
We are hearing stories from grandparents where they have shared this story and the parent is going “Mom, why didn’t you ever tell me about that before?” So we know the stories are starting to happen. And right now, we’re collecting the stories of what it was like for us when we had the disease. Eventually, we’re going to be asking for grandparents to share what it was like when they did share the story, what was the reaction of the parent? And did it have an impact? And we’re hoping, by getting this story out in the media, maybe a listener will call in to OPB and say, “hey, we heard these grandparents and it really opened our eyes to something that we hadn’t thought of before, and we’re going to have that conversation.”
Miller: Sheri, there are a couple of ways to think about the benefits of vaccines. There’s the individual protections that accrue to the kids or adults who get them. And then there’s the version that you were getting at earlier, of herd immunity and the benefits for the population as a whole, in particular people who for a variety of reasons can’t get immunized but are very much at risk. Do you find that it’s harder in contemporary society to get people to care about that second category, to care about their neighbors?
Schouten: Yes, I think that’s somewhat of a problem too. I think nowadays, most women now are in the workforce, they have to depend on childcare, often not within their family. And there’s this kind of “well, I have to go to work, I have to pay the bills,” and they want to send children to a childcare provider when they’re not well. And that’s a dilemma. I think most parents have had to have that conversation amongst themselves. But that’s all the more reason why it’s important to develop herd immunity, so if your child is at childcare and a child who maybe is in the first day of a contagious disease like that, they have protection.
So we need to think about each other. It’s more than just ourselves. And that’s why these conversations are really important, so that they really understand what that means. People say, “oh, measles, yeah, that’s something that used to exist, they got over it.” They have to understand what that really meant and how life threatening those things can be, because they’re not real to them otherwise.
Miller: But that has made me wonder about a broader question of how we as humans learn lessons, what it takes. The explicit hope or plan behind this organization is that by telling these stories, you can convince people of the dangers that they haven’t necessarily experienced themselves – most people haven’t if they’re below a certain age. And I’m sure that for some of us humans that does work, but for some of us humans, we maybe need to touch the burning handle ourselves. How do you think about that, the ways that we take information and change our behavior, even if we haven’t directly seen the harms?
Mills: Well, I just go back to the grandparent-grandchild relationship and also knowing when we actually do start sharing our stories. I don’t know that there is a magic wand to fix what our country is facing today. I think it is going to take the one-on-one and the relationships that we already have within our families. And again, we need to do this, because these grandkids are our most important legacy.
Schouten: And I think also, when there’s important information, you need to hear it more than once. We know from an education standpoint that that’s how we really learn is hearing something over and over. So you hear maybe your grandma say this and then you talk to your friend who says, “well, my grandma had that too.”
Miller: They’re in league with each other.
Schouten: Yeah, and they start those conversations. So it isn’t just this one grandparent that said it, they hear it over and over again, and then it becomes much more real to them.
Miller: Sheri Schouten and Teri Mills, thanks very much.
Schouten: Thank you.
Mills: Thank you so much, Dave.
Miller: Teri Mills and Sheri Schouten are both retired nurses. Sheri is a former Oregon state lawmaker. They are both members for the group Grandparents for Vaccines.
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