Short Wave - The Social Side of Stuttering

Episode Date: January 20, 2021

President-elect Joe Biden has spoken publicly about his childhood stutter. An estimated 1% of the world's adults stutter, yet the condition — which likely has a genetic component — remains misunderstood. NPR Short Wave reporter Emily Kwong speaks with speech pathologist Naomi Rodgers about her research on adolescent stuttering and why the medical model of stuttering is problematic.See pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. Hey, everybody, Emily Kwong here. So today is the inauguration, which got us thinking about speechmaking and speech itself. President-elect Joe Biden has spoken publicly about his childhood stutter. An estimated 1% of the world's stutter. So in the U.S., that translates to 3 million people. And speech pathologist Naomi Rogers is one of them. My name is Naomi Rogers.

I am an assistant professor at the Department of Special Education and Communication Disorders at the University of Nebraska-Lincoln. Stuttering is when a person repeats or prolongs sounds, syllables, and words, causing breaks in the flow of speech or disfluencies. Often it begins in childhood. While most childhood stutters disappear, some stay with a person all their life. Naomi describes stuttering as a social phenomenon. Stuttering. tends to only occur in the context of other people. People who stutter tend to speak really fluently when they are talking to themselves,

when they are talking to their pets, when they are singing, when they're reading in unison with other people. Scientists don't know exactly what causes stuttering, though research is increasingly linking it to genetics. In one study, two-thirds of people who stuttered had a family member who also stuttered. or used to. Stuttering is likely rooted in neurobiology and the actual mechanics of speech. When Biden is sworn in as president today, he'll give a very important speech, but it's actually a different speech that Naomi keeps thinking about from 13-year-old Braden Harrington, who was

invited to endorse then-candidate Biden at the Democratic National Convention in August. Hi, my name is Braden Harrington, and I'm 13 years old. And without Joe Biden, I will be talking to you today. About a few months ago, I met him in New Hampshire. He told me that we were members of the same club. We stutter. It was really amazing to hear that someone like me became vice president.

Just listening to it just now for the umpteenth time, still gives me goosebumps. Again, just thinking about the pervasive narrative that exists in our society, that, you know, stuttering openly is not desirable. The fact that he was able to just be himself, talk in his most authentic voice, was incredibly huge. Today on the show, the social side of stuttering. What it feels like to stutter as a kid and to hide it and how speech pathologist Naomi Rogers is pushing for a new way of thinking about it altogether.

This is shortwave from NPR. Naomi Rogers grew up in suburban Chicago. Her stutter appeared in childhood, and in her words, she didn't have effective therapy through elementary school. I would get pulled out of class and go practice reading tongue twisters and sounds that I didn't even have trouble saying And so like a lot of other young people who stutter, you learn from a very young age how to kind of go underground, how to kind of keep the stuttering to yourself inside just because you know that nobody else in your life understands what your experience is like. And that is the root of where, yeah, a lot of like early shame and fear vulnerability comes from, I think, for a lot of folks who stutter. When I got into high school, I started working with a phenomenal speech-language pathologist who was also a person who stuttered herself.

And so for the first time, I felt like I could actually talk to somebody that understood the experience. Do you remember what this speech therapist said to you that made an impact? Or even just how you felt in her presence? Yeah. A lot of my memories are of just crying. Honestly, I remember going to her office weekly. I would drive an hour each way, spend an hour there, and I would just unload. I felt like I could finally breathe.

I felt like I could finally talk to somebody who understood the experience. And that was my outlet. I just cried it out. She knew very early on that I had no interest in learning how to speak more fluently. I did not want to practice specific strategies or techniques for making my speech sound really fluent. You know, I really just wanted somebody to validate my feelings and my thoughts about starting and overall communication, like who I was as a person and as a communicator. And she was really successful in doing that. And I'm actually wondering now if those early experiences in therapy that I had motivated me to suppress a lot of my stuttering and to hide it at all possible costs because I didn't want to go to therapy anymore.

Is that what you meant a minute ago about going underground? Yeah. That you basically hit it as a kid before you met this really good speech therapist? Yeah. Yeah. Exactly, just kind of hiding it. And so one of, you know, I think being a person who stutter is pretty mildly as I do, it's a, it's pretty easy for me to hide my stuttering. It's pretty easy to just scan ahead, anticipate a word I'm going to stutter on, swap in a word that's easier to say. And so there are sometimes when my language might seem a little convoluted or like I'm talking around something or like that's kind of an word choice, but it works. I mean, those are all done in an attempt to hide stuttering to pass as a fluent speaker.

I'm picturing you in this office, you'd go to see her and you'd just cry. Yeah. And she knew that you didn't want to improve fluency. That wasn't the goal. And it seemed like the biggest shift between that therapy and the therapy you received as a kid, is the therapy you received as a kid is so focused on fixing you. Yep. It almost seems like the medical model, it gets at the wrong thing first.

Yeah. Without even individuating, like, the treatment for the person. And I'm just wondering if you could, like, describe the difference in those two therapy modalities and how it helped you. Oh, yeah. So those early experiences with speech therapy were hugely. rooted in the medical model of disability. And so the medical model of disability defines stuttering basically as abnormal interruptions in the forward flow of speech. And so that is purely grounded in what the listener hears. It is nothing to do with what the speaker who stutter is experiencing.

So it's like a listener-centered definition of stutters. actually. Yeah, which is messed up because stuttering is such a personal experience, right? And so people who stutter, if they're stuttering openly, that is a true expression of who they are. They're just using their voice, however they were born with it. And so the barriers to good quality of life, to psychological well-being are really on the environment. And so I love this new definition that a lot of folks in our field are trying to push forward, that stuttering is a neurodevelopmental variation that leads to a unique forward execution of speech sounds. Importantly, those are produced in the context of language and social interaction.

If we think about fluency on a spectrum, we have people that are highly fluent and we have people that are highly disfluent, then stuttering reflects just a natural variation in fluency, which I think is really, really important. And it situates stuttering as a difference and not as a disorder. Absolutely. Yeah. Naomi, I want to talk to you about some of your research. Specifically, clinical research you've done with folks ages 13 to 19 around how they relate to their stutter. First, why did you want to focus on this age group in particular? So I think that everyone can attest to the fact that being an adolescent is really hard. And when you add stuttering into the mix, it becomes even more complex.

And those neurobiological changes of puberty and social cognition are making adolescents. really, really sensitive to the social world around them. I really, I started to believe that we need to be looking at adolescence because that's when social anxiety tends to take root. Then maybe we can intervene earlier. Maybe there are things that we can do near the onset of social anxiety or other mental health adversities that can actually put young people who stutter on a better path to improved quality of life and mental health outcomes.

And teasing apart how people who stutter relate to the social world around them, you wanted to measure something called listener reaction. What is that? Yeah. So you talk to any person who stutters, and they will tell you that they experience a whole host of listener reactions to their stuttering. Like what? So these could be like really subtle.

things like the listener might look away really briefly or you know the corner of their mouth might upturn a little bit or maybe their eyebrows will raise like two millimeters it could be like really really subtle yeah or they could be really blatantly and overtly negative right like there are people who stutter that are overtly mocked laughed at teased um and so the range of of listener reactions can be really, really varying. And so what I found in my research study with adolescents who stutter is that adolescents who stutter tend to be really tuned in to other people's emotional expressions. I specifically looked at anger and fear because those are most oftenly used in kind of emotion research. And they are just really tuned in to emotional

expressions, to a degree that typically fluent adolescents are not at all tuned into. It's really fascinating. And what your research has found is not that they demonstrated more social anxiety than their peers. It's that they were on, they were more vigilant and more on high alert for negative reactions from people who they were talking to. So in light of that, how can we who do not stutter be better allies to stutterers or, people with speech disfluency in general. The most important thing that listeners can do is be patient, not filling in the person's words for them, just maintaining neutral eye contact, nodding along, and just giving the person the

time they need to say what they want to say. That is the most important thing that all listeners can do for people. who stutter, right? In that moment, there's a lot of, oftentimes people feel a lot of guilt. There's a lot of anxiety, a feeling like they have to rush through the moment to get through the awkwardness. And there's kind of also sometimes a feeling of responsibility for making a situation awkward. So there's a lot of internal feelings that go along with moments of stuttering. But I think that it's always, it's always welcome to ask what the person's experience is like, and they don't have to answer if they don't want to, but trying to learn about what the experience is like, I think

really demonstrates to a person who stutters that you know that their experience is much more than what's coming out of their mouth. Yeah. Wow. You know, if the, if the whole world stutters and non-stutters included, like really took in that message, what do you think the world would be like? Like, what's the thing you want people to take away from your work? I, um, so my biggest hope is that our communities and our society can look at stuttering as something that is different, but something that's beautiful. And how can we really honor the diversity in how people communicate and really try to elevate the diversity that naturally exists in how people talk and just helping people who stutter feel less crappy about who they are.

So that means kind of getting out of their heads and getting into the interaction, worrying less about if they're going to stutter or not. They're just talking spontaneously and joyfully and easily. because they're not as worried about what's going to happen if they stutter. And that is where Naomi is now with her stutter. She says stuttering has actually given her a lot. She wrote in an email that it makes every interaction interesting. Every time she stutter, she is, quote, declaring her commitment to her authentic self.

And while that sometimes adds stress or anticipation to an interaction, she says it ultimately allows for a deeper connection with the people. people she is talking to. This episode was produced by Thomas Liu, fact-checked by Ariel Elizabeth and edited by Giselle Grayson. Special thanks to Emily Abshire, too. I'm Emily Kwong, and this is Shortwave from NPR.